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Mom has Stage IV Bladder Cancer
Hello. I am new to this site and forum but I figured it would be a good place to seek some help when feeling helpless.
My mom was diagnosed with Bladder Cancer in 2010. She went through the BCG treatments and had a few problems with that but after completion she was told the tumors in the bladder were gone. She was being checked every 4 months and was always told the scan was clean. She had her last scan in the end of March and was given the same result as always, Cancer Free!!. She had been experiencing some back pain and thought it was muscular and was treating it as such. The pain continued to get worse and moved to her abdomen. She finally made a doctors appointment with her regular doctor. The doctor examined her and told her she needed to go straight to the emergency room because she was very concerned. In the ER they did a cat scan and came back and said the lymph nodes looked abnormal and could be possible lymphoma. They admitted her and scheduled a biopsy. Once the biopsy results came back they determined the bladder cancer metastasized to her lymph nodes. Devastating news for my mom and us kids. After that, everything just seemed to happen so fast. The main concern was getting the pain under control. Three hospital stays later they finally found a pain medication that worked. She moved in with me and my family(she is a widow and lives alone), was told she could no longer work and had to go on indefinite long term disability, and could not drive (because of narcotics she is receiving). They gave her a life expectancy of 16-18 months. Within a month of diagnosis she was beginning Cycle 1 of her 6 cycles of treatment. She is receiving Cisplatin, Gemzar and the trial drug Avastin/Placebo. She is currently on her 5th Cycle of treatments. She has been doing really well with the drugs. The only side effect was spotty hair loss and they have a hard time keeping her blood levels at a safe count. She has received two blood transfusions and every time she goes in she needs magnesium and potassium, even though she takes a supplement of these two every day. They have split up the Cisplatin over Day 1 and Day 8 because her kidney levels are very low. Half way through treatment they did scans and found that her tumors are reacting to treatment and have reduced tremendously. This was very positive news. In 2 weeks she will start the 6th cycle of this treatment and after that will be on the Avastin/Placebo for maintenance.
Now that I have given back ground, I can get into why I am posting. I am very lost. I have 3 siblings but I have been my moms primary care giver from the beginning. I go to all doctors appointments, transport her back and forth to appointments, sit with her during the bad days, have fun with her during the good, I hear all the bad and I am the one to explain and try to answer her questions. I have suggested to her that she seek professional help but she doesn’t want to. Every week she is asking me “How long do I have?”, “Why can’t I work?” She gets confused and often forgets that this is not curable and I am the one reminding her of that but trying to stay positive at the same time. I don’t know what is the right thing to say to her when she has these questions. She does ask the doctor and talks to the nurses and they are all so wonderful and patient with her, but she doesn’t seem to retain what they say. Since she is at the end of this treatment the questions are coming more and more. She is scared because she knows the cancer will come back. Many of her days she is very down. I try to tell her she needs to take it day by day and every day she is well enough to play with her grandkids and live a “normal” life she needs to look at that as a positive. If she wakes up everyday wondering “When am I going to die”, it can’t be healthy for her. I feel like she hasn’t yet come to terms with her illness. I also have the same questions. What happens now? How long until the tumors come back? How accurate is the “Life expectancy” the doctor gave us? Should I be preparing her more for “the end” or keeping her positive that she will live for a long time? I don’t want to give her high expectations and disappoint her, but I don’t want to be a downer either.
I apologize that this is so long. I have had a lot bottled up. The stress of it all leads to many arguments between my mom and I (mainly over driving, she is still under some very high doses of narcotics and she wants to drive but I don’t think its safe and neither do the doctors) and I resent my siblings because they are not as involved as I am and the time they spend with her is fun and memorable, while the time I spend with her is not. If anyone has any advice for me, I would greatly appreciate it. I’m lost and confused and I have no where else to voice my concerns or to get answers. I don’t let my mom see my worry, sadness, frustration, etc… I try to stay as strong as possible for my mom. I try to be her rock.
Thank you in advance.
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1 Reply
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I am so sorry for what you and your mother are going thru . I wish I had all the answers that you need. You sound like you love your Mom very much and she is blessed to have you.
My husband had non hodgkins lymphoma and I know first hand what a toll all the appts , chemo and the personal care of the one we love takes on you the caregiver. Have you tried to talk to your siblings about helping you to take care of your Mom ?
You and your Mom wonder how long she has and I can only tell you from what I went through and how I got peace . I almost died from a bleeding ulcer, I was critical and wondered. am I going to die ? I made it through that to find out a couple of years later that I had bladder cancer. That was in 2006. Mine was not invasive but has come back several times. After years of asking the Lord , is this it ? I finally got my answer . I had as many days as He had already decided for me. No one could give me anymore , and no one could give me any less. He truly holds my life in the palm of His hand. That has given me great peace and took the burden from me of wondering when.
The drs. can tell you how previous patients have fared and and maybe how long they think someone has, but they are not God.
I think if you check out the info on this site and read past post of others you may be able to get more of your questions answered from ones that have traveled the same road as you and posted about it. You and your Mother will be in my thoughts and I know that if you ask the Lord for help in carriing this burden he will give you strength to make it. Rocky
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