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(5 replies, posted in Grief Management)

Dear Desiree, 

My heart goes out to you on losing your mother.  I, too, lost my mother to this terrible cancer.  She passed away a year ago last July.  She too, was my best friend.  That being said, I also struggle with the loss.  What has helped me with my grief is my belief that we will be together again one day.  My faith in Christ is what carries me. 

We all deal with grief in are own way, but at some point it can become unhealthy. I remember when my mother unexpectedly lost her husband to a heart attack, and then six months later lost her mother to cancer.  These losses were devastating to her.  I witnessed her strength during that time, even though I know she was hurting tremendously.  Even during her illness, she was so stoic.  She was teaching us that we have to go on and make the best out of whatever life throw our way.  Believe me, I know it's not easy.  I have days where I just cry off and on, and then days when I feel an incredible void in my life.  During these times, I find myself reaching out to help others.  There are so many people in need, and it's a great way to help in the healing process. 

As far as signs,  I do believe God gives us signs that our loved ones are fine.  For example, one day at work some of my co-workers were trying to come up with a name they thought I look like (I guess they don't think I look like a Mona).  One of them said you look like a "Virginia"  I looked at her and said, "that's my mother's name."  Her mouth just dropped.  She did not know my mother's name.  What are the odds she would have come up with Virginia?  May be Debbie, Linda, Susan, Patricia, etc (more current for my birth year). 

Desiree,  I pray that you will find peace and happiness again.  Your mother would want that.  Please continue the grief support classes as long as you need.  Seek healthy ways to grieve.  There are lots of resources out there.  God Bless you.  Mona

Lainy, thank you for your kind words. Love the beautiful poem you shared. 

Clare, I cried too when I read the poem.

Mona

This past year has been hard dealing with loss of my mother.  She was such a giving person.  I ran across this poem that I would like to share with you.  I believe it is expresses how my mother would want me to honor her.

When All That's Left is Love - Rabbi Allen S. Maller

When I die
If you need to weep
Cry for someone
Walking the street beside you.
You can love me most by letting
Hands touch hands, and Souls touch souls
You can love me most by
Sharing your Simchas (goodness) and
Multiplying your Mitzvot (acts of kindness)
You can love me most by
Letting me live in your eyes
And not on your mind
And when you say Kaddish for me
Remember what our
Torah teaches,
Love doesn't die People do.
So when all that left of me is love
Give me away.

God Bless, Mona

At the time my mother passed away, the doctors were unable to detect any cancer.  They ran every test imaginable that kept coming out negative for cancer.  They said she had cirrhosis of the liver which they thought might have been caused by the treatments.  We were unaware there was a risk of causing more damage to the liver with the treatments.  She got 23 treatments of radiation which was stopped after she accumulated fluid in her abdomen.  She had ascites two weeks before they stopped the radiation.  Has anyone ever heard of radiation or chemo causing cirrhosis?  Mona

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(3 replies, posted in Introductions!)

Hi Teapot.  I'm so sorry to hear about your mom.  My mom past away last Thursday due to this dreadful disease.  She too was my best friend.  A couple of days before she past, her kidney levels were going up.  We had been thinking about hospice for a week or two prior, but we kept getting different opinions from the doctors.  The hospitalist kept telling us she wasn't going to get better and that we should consider hospice.  The oncologist didn't agree and said that since they couldn't find any active cancer, that they felt she had a chance to recover and could lead a good quality of life.  At this point, she had cirrhosis of the liver (not sure how that happen), weighed 84 lbs, and had a feeding tube.  On her last day, we had asked for hospice.  But it was too late, she had passed that morning. Looking back, we wished we had called in hospice a lot sooner.  I've heard wonderful things about them.  The most important thing you can do is keep her as comfortable as possible.  This disease is really such a roller coaster ride.  I know how difficult it is to watch your mother go through this.  My sisters and brother struggled taking care of our mother and watching her be so sick.  She was surrounded by love throughout her illness.  My heart goes out to you and your family.  I will be praying for you.  God Bless, Mona

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(6 replies, posted in In Remembrance)

Theresa, I am so sorry for the loss of your husband.  I lost my mother Thursday to this dreadful disease.  How beautiful that you and your children prayed over him and were with him when he took his last breath.  My thoughts and prayers are with you and your family.  God Bless, Mona.

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(9 replies, posted in In Remembrance)

Thank you so much for your condolences.  This site has been such a blessing to me.  I didn't post on here much, but I was on here practically every day.  Each and every one of you were such a source of comfort for me.  Right now, I need some time to grieve, but I plan (God willing) to be back.  I want to do what I can to help fight this ugly disease.  God Bless.  Mona

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(6 replies, posted in Introductions!)

Hi Laurkcp,

My mother just passed Thursday from this cancer.  She sounds a lot like your mom.  She too was 79 years young.  She was my best friend.  In a few weeks, I would love to talk to you about our experience.  My email address is rjbyrnes@rgv.rr.com.  Please feel free to contact me.  You will find this site to be a blessing.  My prayers and thoughts are with you and your family.  God Bless.  Mona

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(9 replies, posted in In Remembrance)

Sorry, I previous posted this message in the wrong place.  I lost my beautiful mom and best friend yesterday morning.  There is comfort in knowing she is with the Lord and is no longer suffering.  Although I will miss her greatly, I know that I will see her again in Heaven where there is no pain or suffering.  My thoughts and prayers go out to everyone who is battling this disease.  God bless.  Mona

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(19 replies, posted in General Discussion)

Lainy, that's interesting.  I didn't know there was no way to detect them.  The vet didn't discover the cat had them until after she died and they did an autopsy.  You're right about not knowing enough about CC.  Hope that changes in the near future with research on it.  I know the big problem is that since it is a rare cancer, the money for research is lacking.  Again, hope that changes as more people become aware of this cancer and more funding is made available for research.  Blessings.

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(19 replies, posted in General Discussion)

Yes Lainy, it blows my mind too!  The vet believes the cat (she was an indoor cat) ate a lizard that ate a snail that was infected with the fluke worm.  I keep wanting to make a connection between the cat and my mom because it's such a incredible coincidence.  Wouldn't you have to eat raw fish that was infected with fluke worms to get it?  I would think if the fish is cooked, it would kill the parasite.  Mona

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(19 replies, posted in General Discussion)

Oh, by the way, my mother's cat died due to fluke worms in her liver.  This was about two years ago.  The vet was shocked because fluke worms are very rare outside of tropical areas.  Weird that my mother would end up with a cancer that can be caused by this parasite.  I mentioned this to my mom's first set of doctors, but they brushed it off.  They didn't see a connection.  Mona

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(12 replies, posted in Introductions!)

Dana, praying that your mother has success with the clinical trial.  Blessings, Mona

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(19 replies, posted in General Discussion)

Lainy, my mother didn't want to travel, so we went with the Cancer Research and Therapy Center.  They are affiliated with The University of Texas Health Science Center.  My understanding is they are staying on top of the latest treatment options available.  They were the ones that were finally able to diagnose her using Spyglass.  The previous hospital she was in was unable to come up with a definite diagnosis.  She started having symptoms in October and was not diagnosed until January.  What frustrates me is there are so many doctors involved, and there seems to be a lack of communication.  It's especially upsetting when you run across an insensitive doctor.  We have made it very clear to the oncologist that the hospitalist was rude and insensitive.  He told us that the hospitalist does not make the calls, he does.  He also apologize for the hospitalist's comments.  I know MD Anderson would have been the ideal place in Texas to go, but my mother was unwilling to travel.

Marion, I did ask the oncologist about cachexia.  He says because her ercp and scans show no signs of cancer, he really doesn't think cachexia is what's going on.  They are going to put a peg tube in her today.  He says she has no muscle mass, and her body is virtually eating itself.  He feels there is no time to waste.  He assured me that the peg tube will definitely improve her nutrition status. 

Thank you guys for your input.  I will keep you posted.  Blessings, Mona

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(19 replies, posted in General Discussion)

Hi Dana.  I see your mom is being treated in San Antonio.  My mom is also being treated in San Antonio.  Is she going to CRTC?  Mona

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(19 replies, posted in General Discussion)

My mother was diagnosed with bile duct cancer (in common bile duct) in January of this year.  She has 23 treatments (Xeloda/radiation) out of 26.  They stopped the treatments due to abdominal swelling.  She was given lasix which took care of it.  Her last treatment was April 28th.  In the meantime, she has been eating very little due to food tasting bad.  She was admitted to the hospital two weeks ago for NG tube feedings.  She was there for about five days receiving glucerna through the tube at 20cc/hr.  The plan was to supplement her through the tube which still feeding her orally.  While she was there they did a ercp to check her stents and a cat scan.  The report came back that the bile ducts were tumor free.  There was a spot on her duodenum that was biopsied.  It came back benign.  After she was sent home, the eating problem continued.  She is currently at 84 lbs.  The oncologist had her admitted back to the hospital to try to determine what is going on.  The hospitalist came to visit her this evening.  He was none to happy to see her return.  He told my sister they did everything they could for her while she was there.  He also told her there were no good options for my mom.  My sister told him her scans came back clean.  He said scans are not always right.  He then tells her about a patient that had a clean scan who died shortly after the scan.  They did an autopsy that revealed her lungs were full of cancer.  I'm appalled by his attitude.  My sister said he was very rude and seem to be angry.The concern is will she get the care she needs and deserves.  It's so frustrating.  There have been so many dr's and none of them seem to be communicating with one another.  The oncologist was not even aware that my mom had a cat scan and ercp done at the hospital.  He never received the results.  This is really scary!  Thanks for listening.

Hello Gavin.  Thanks for your kind words.  My mother is being treated at Cancer Research and Therapy Center in San Antonio.  One huge concern we are having at this time is the fluid in her abdomen and the effect it might have caused with the radiation treatments.  She noticed the swelling a couple of weeks ago.  She asked the nurses and the people administering the radiation about it and all they said was that sometimes that happens.  They continued giving her the radiation.  She also mentioned it to the radiologist a couple of weeks ago, the radiologist pretty much blew her off.  At that point, she had not once checked my mother's abdomen since starting the radiation.  When I went with my mother on Monday to see the radiologist, I had my mother raise her blouse and show the Dr. her abdomen.  Well needless to say the Dr. became very concern.  She said the fluid build-up could change the anatomy by shifting things around.  The radiation has to be very precise.  Now we are wondering if they were hitting the right area.  I will say they did do a cat scan and the Dr. said the tumor has shrunk.  They will do another one at the end of May.  My mother will be seeing the oncologist on Monday.  I am currently making a list of questions to ask him.  Any suggestions on what I should ask him would be welcomed.  Again, thank you for all your help.

Hi Marion.  My mother is seeing her oncologist on Monday.  My sister has been measuring her abdomen and last I heard it hasn't gone done.  I'm afraid they are going to have to drain the fluid.  We'll find out tomorrow.  Thank you for all you do.  You guys are a bright light to all of us going through this awful disease.  Mona

Thank you for your quick response.  It's reassuring to know that what she is experiencing is expected, and that she will (God willing) get better.  I appreciate your feedback and will keep you posted on her progress.  My siblings and I are planning to take her out of state next month to see her siblings, so we are praying that she will be well enough to make the trip. 

God bless you.

My mother (79 yr. old) was diagnosed with inoperable bile duct cancer in January of this year.   She had a metal stent placed and has been receiving Xeloda and radiation treatments.  She was suppose to receive 28 treatments of radiation but only had 25 due to abdominal swelling.  They did a cat scan and blood work.  The ct scan showed pockets of fluid around her liver and pelvic.  Her blood work looked pretty good overall.   Her oncologist had her stop the chemo this week and put her on a diuretic for the fluid.  She is off the Xeloda this week per the Dr.'s orders.  She is currently on a diuretic due to the abdominal fluid.  He also put her on a steroid to help stimulate her appetite.  She is to follow up with the oncologist on Monday.

We were told that after she completed her radiation treatments, she would start to feel better in 7-10 days.  It has been 7 days, and she appears to be feeling worse.  My question is what are the symptoms one goes through after stopping chemo and radiation?  She is currently experiencing shortness of breath, extreme tiredness, and loss of appetite (even with steroid).  She says nothing taste good.  It seems we have tried everything to get her to eat, but nothing is working.  She is looking so thin and frail.  She is getting weaker, and I'm fearing that she is on downward spiral.   Any thoughts or suggestions would be greatly appreciated. 

Thank you for this amazing organization and the support you provide.