need answers for dying mom

[Diane]

My mom has small cell lung cancer.  She had much stomach pain and I thought it was the lung cancer spreading.  A visiting nurse came to the home and said it was something else.  We rushed her to the hospital.  They said she had pancreatitus.  They ran some tests and her enzyme levels were high.  They then said she had pancreatic cancer.  They based it on the fact that: A.  She was not a diabetic, B.  She did not drink alcohol, C.  She had her gallbladder out 2 years ago, therefore it must be D.  Pancreatic Cancer.  They did not find any tumors with a CAT scan.

My mom

[Karen]

Your mom has probably had some food sensitivites most of her life that went undiagnosed and untreated.  I can't tell because your info is incomplete, but plese don't give her antibiotics.  IThey will only make her stomach more irritable and cause more problems.  If her bowels aren't working well, she may have a blockage somewhere.  Feed her on slippery elm powder and marshmallow tea.  Mix it together with some licorice of you can get if from your health store. Get some vitamins into her with juices, fresh carrot and celery - just let her sip it. Rub her tummy with chammomile oil diluted in 10 mls of olive oil, put that into a bath for her and get her to drink chammomile tea.  Get chammomile homeopathic 30c and give that to her every half an hour.  You could do with a few doses as well.  Nothing here will harm her, but may help to soothe the pain.

[Diane]

Thank you for all of the advice.  I actually went to the vitamin store to buy essiac, but they were out.  

She really deteriorated this past week hard and fast and this morning she died.

[shelly]

DIANE,                                                                   I,M SO SORRY ABOUT THE LOSS OF YOUR MOM.I LOST MY MOM ALSO AS YOU MAY REMEMBER READING IN MY COMMENT TO YOU.IT IS A HARD TIME TO GET THROUGH BUT YOU SOMEHOW FIND THE STRENGTH TO LIVE YOUR LIFE WITHOUT THE PERSON THAT KNOWS YOU THE BEST. MY MOM WAS NOT ONLY MY MOM BUT SHE WAS MY BEST FRIEND.WE WILL MISS THEM TREMENDOUSLY BUT WE WILL GO ON. THE PAIN OF YOUR LOSS WILL NEVER GO AWAY BUT YOU WILL LEARN TO LIVE WITH IT. TAKE CARE AND GOD BLESS.    SHELLY

[To Shelly from Diane]

Thanks for sharing your story with me.  It seems like we both have a lot in common except I was never smart enough to switch my mom's Doctor.  He actually missed the boat in the summer of 1998 when she went to him and complained of difficulty breathing, climbing stairs, excessive coughing, etc.  She went to him about 4 times in 2 months and finally asked him if he would take an x-ray to see if she had pnemonia.  He agreed and told her she was fine.  (The radiologist's report said there was a "patchy infultrate that should be examined further".)  She could barely walk in October - (3-4 months later) and we took her to the digestive disorder's center.  The doctor wanted to get a cat scan and called my mom to say that she had the lung cancer he scheduled her with an onocologist's appointment the next day.  My family kept saying the x-ray she had taken never showed anything therefore it must be in its early stages.  When I went to the hospital to pick up the x-ray and saw the radiologis's report, I was floored.  I let my mom's primary care physician know how upset I was.  He told me that she always made everything sound as if it wasn't critical as it was.  I informed him that she had been there 4 times in 2 months and that in itself was unusual.  (Besides, people don't usually schedule appointments with their doctor unless they aren't feeling well.)  He went on to tell me he was not afraid to prescribe my mom any narcotics for her pain.  (I guess he was trying to make me feel better, but I really never understood those comments.)  My mom always liked this doctor and never quite understood his mistake.  (I think she blocked it out of her mind.)  I decided to let her keep him, because I kinda felt I had an upper advantage.  I was wrong.  When she went into the hospital for the pancreatitus, they wouldn't feed her or give her TPN.  I begged to every doctor and nurse.  I should point out she went to her primary care physicians hospital and not her regular onocologist's hospital.  One onocologist would come into the room and say she doesn't have long to live and then would take me out and say that he was worried why my mom was so depressed.  He told me he wanted to give her an anti-depressant in her IV.  (He also did the same thing to my brother.)  I asked for the TPN and he said he couldn't do that because of her pancreatitus.  (It was 7 days without food.)  I told him what about some type of vitamins.  He said okay and he also give her the anti-depressant in her IV.  When we left the hospital, I asked the nurses if my mom had ever gotten the anti-depressant or vitamins, they said no.  (What was the point of him making a big deal out of it 2 days to me and one to my brother if he wasn't going to do anything anyway.)  They even disconnected her IV in the hospital one day when I got there.  I asked my brother why and he didn't know.  I then when and asked the nurses why and they said it was doctor's orders.  When I asked which doctor, they couldn't tell me who.  After 10 minutes of panicking, I said nevermind, I would call her primary care physician's office.  They said nevermind, they were putting it back on.

     When we got home from the hospital, I fed my mom egg custard made with half & half, cheeze, anything with high fat and protein.  Then I read here that those things were bad for my mom.  I didn't know what to feed her and quickly deteriorated the last week.  I still question myself if I did everything I could do.  (I guess that's why I come here everyday, so finally see what the doctor's response would be.)

     I always believed the doctors had their patients best interests at heart.  I don't believe that anymore.  I think it is politics.  I think they didn't want to help her with the pancreatitus because she was dying anyway.  I think it took too much money out of their pockets (via hmo insurance) to keep her alive.  My mom's primary care physician called me when I asked for the TPN at home, and he said he only helps living, he doesn't know how to help the dying and I should get the hospice, not him.  I told him Kevorkian went to jail for killing terminal patients.  He said he wasn't in the same category as Kevorkian.  I told him I agreed, Kevorkian helps patients who have terminal illnesses and WANT to die, he (her doctor) doesn't allow the patient to have a choice.

     Sorry this is so long.  I miss my mom very much.  I have a hard time going to a grocery store and seeing the foods I fed her the past few months.  There is so many things that remind me of her and I can't get it out of my mind.  She was my best friend.

     Thank you for trying to help me.  And thank you for the second time to know I am not alone.  I know you loved your mom very much too.

         Diane

[cassandra]

Hi Diane,
I read your story and was touched by your post, I can't even imagine the pain you must be feeling. Your mom was so fortunate to have a daughter and best friend as caring as you. Just know you did everything you could and she knew that too. Don't beat yourself up about not changing her doctor, he made some very serious mistakes- not you. It's difficult to question their treatment because WE don't know what's best, we count on them in our most vulnerable times to make crucial decisions for our loved ones. I think he made such serious mistakes that it might even be malpractice. I'm not a doctor, but I think my comments might give you something to look into. I think the x-ray (showing the infiltrate) should've been diagnosed as cancer much sooner, and followed up on immediately. Along with the symptoms she was having the doctor should've put the pieces together. His comment "she makes everything sound not-critical" seemed like he was covering his butt, not to mention his comment about narcotics to change the subject and distract you. From what I read about pancreatitis (and a friend on TPN who has it) you cannot eat when you have it because the pancreas needs rest, that's why they put people on TPN. The doctor may have lied to you about that. In the very least they should've had her on IV vitamins, if they did the IV fluid would be bright yellow. Your suggestion about vitamins was great, not followed up on even though he agreed. I don't know if this is the reason they didn't put her on TPN, but it costs about $700.00 a day. Even though she was dying they should've done all they could to sustain her life, especially when pancreatitis is something that will improve. If she was dying from the cancer I could maybe see why they didn't use supportive measures. The doctor was very insensitive in his comment he "only helps the living". What if that was his mother? His attitude is disgusting. Please don't beat yourself up about not changing the doctor, he took advantage in your most painful time and there's no way you could see this with all you were going through. We have to put our trust in them because we are not doctors, but he abused that. Your mother knew (and still does) that you love her and did everything you could, you were standing beside her and caring for her when she needed you most. You can bet she's very proud of her daughter and she will be watching over you. God bless you.

[To Cassandra from Diane]

I can't help beating myself up and crying for my mom every couple of hours.  I feel really guilty for feeding her the wrong foods when she returned from the hospital.  I also hate the doctors who never gave me instructions on what to feed her.   Hate is a strong word, but I really do.  I actually think she died from malnutrition more than I believe she died from the cancer.  (I think the cancer overtook her body because there wasn't anything there to fight it.)

     She was doing so good except for the stomach pain (and over-medication of pain killers as a result of the stomach pain) and went to the hospital.  The gastro-internist doctor was great.  He talked to her like she was a living human being, like she was.  The other doctors (one from the Primary Care Physician's office and the onocologist) treated her like she was already dead.  They would talk to us like she wasn't in the room and talk about her dying.  Both my brother and I at separate times asked the one primary care physician's office doctor not to talk that way in my mom's room.  She told my brother she felt my mom had to know.  I really think they just wanted to make her give up on living.  My mom's Primary Care physician never came to the hospital, just the doctor's from his practice.

     I think they were tired of paying for the cat-scans, doctors, hospital bills, chemotherapy, x-rays and wanted her to die.

     Her Primary Care Physician did call me on my cell phone about a half-hour into the viewing at the funeral home.  He gave me his sympathies and told me his mother had died of lung cancer about 10 years earlier (I can't exactly remember how long it was but I think it was 10 years.)  Given my age and his age though, I'm sure his mother was much older than 69.  

     I do believe it is pure malpractice.  I don't really know if it is because of his pure neglect or if it is a result of the HMO's.  I don't know how they really work, ie. if they are making the doctors work much harder than ever or not.  I would sue in a heartbeat if I thought it would prevent someone else from ever having that fatal error or if it could bring my mother back.  I did point out to him on 2 separate occasions what he did and I hope it will make him read his reports more carefully and pay attention to his patients more carefully.  

     I talked with an aunt who is in the convent tonight and she told me my mom is beside me now in spirit.  I hope so because I really need her as much as she needed me.  

     My mom and dad were divorced, but he still loved her very much.  At the funeral, I was sitting in front of him crying and I heard his wife whisper John.  I turned around and he was broke out in a head-to-toe sweat and his eyes were behind his head.  I shouted dad, dad, and the minister stopped the ceramony and we called 911.  He was alright, but it scared me.  The minister wanted to stop the service, but my dad wouldn't let him.  We were to go to the cemetary after the service, but the minister changed it so everyone would stay and eat at the church.  My brother, husband, & I were the only ones who got to go to the cemetary.  My brother cleaned off her casket and finally broke down and cried.  

     I wish I could stop crying.  I wish I would wake up in the morning and not think about her being dead and all of the things I need her for or will never be able to do again.  I know time will heal the pain.

     I'm sorry.  I'm not normally this gloomy.  It really helps me to get the pain out.  I also want people to know to keep trying and searching for the answers to their health problems, and not to trust the doctors (like you said, we count on them when we are the most vulnerable) if you don't feel it is right.  Luckily, my husband was very supportive of me in my quest of trying to help my mom.  Both he and his boss were wonderful, and have even commented that they want me on their side if they ever get sick.  If I was stronger, rather than staying with my mom at the hospital night and day, I would have probably done better to search to find out what was the best treatment for pancreatitus and if TPN was allowed, and went to a lawyer and insisted on it.  Then maybe I'd be a little more at peace too.

     Thanks for writing Cassandra.