Topic: Update on my Mom

Hi all,

Another trip last night from New Bern to Greensboro.  Got here around 11:30 last night.  Mom's ascites has increased since I was here to have a look this past Friday.  On the 20th of January she was seen at the clinic at Duke and weighed 122 lbs.  This past Friday Dad and I got her on the scales and she was at 140.  I called the oncologist and said we need to do the procedure now.  We've waited since this morning for a bed to become available at Duke and finally got the call at 6:15 tonight.  We left for the hospital and got there about an hour later.  She weighed in at 147.5 and is very uncomfortable from the fluid.  When I left to drive back to Greensboro at 11:30 (Seems to be my magic number here lately), they were hooking up an IV of lasix and will proceed to do her first paracentesis in the morning.

Please keep us in your prayers.  Daddy is staying with her tonight.  (They've been married for 57 years and probably have never spent more than 20 nights apart.)

They will keep her in the hospital for a day or two probably and I think are planning to leave a drain in place that can be opened here at home. 

I've made the plans for Hospice and Palliative care and will schedule the nurse to come for the first accessment when Mom gets home from the hospital.  I figured it would be a good time to move to this next step.  I know Daddy will be relieved to have a nurse that can help in the decision making.

It's now 12:54 and I'm going to hit the tub, and head back to Duke in the morning (or I guess I should say this morning) in order to get there before rounds begin.  (around 6:30).  Say a prayer for me on the roads....I've put 27,000 miles on my new Camry since mid June 2008.  Thank God I love to drive.  I can only pray there is not a microphone hidden in my car.  I pray, I scream, I cry, I sing, I listen to Harry Potter and wish I had a magic wand to make this nightmare just go away.

Just reread this and am rambling.  Take care my friends, You'll all be in my prayers on the way back to the hospital.

God grant us all peace with this monster of a disease.  I hate it.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Update on my Mom

Pam....Drive safely, and I am wishing for you Mom to feel much better after the paracentesis.  You are putting everything in place for you Mom to receive the best of care.
My heart is with you,
hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my Mom

Pam,

I have been there & know how very hard this all is on all of you. You and your family will be in my thoughts & prayers. Hoping for the best.  All you can do is try to hang in their & do the best you can. Take care of yourself too.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on my Mom

Pam, please be careful on the roads, your mom is being taken care of but you have to take care of you! Don't you just feel like the car knows it's own way? We are thinking of you and praying for your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my Mom

Dear Pam,
All good thoughts and prayers are going out to you, your mom and your dad. Hopefully your mom will have some relief soon.
Hugs,
Joyce M

6 (edited by ljg Fri, 20 Feb 2009 13:46:39)

Re: Update on my Mom

Pam-

If it helps to know this, they installed a port in my Mom and I was taught, alongside of a Hospice Nurse, to drain the fluids to relieve some of my Mom's pain.  This became a ritual and we were required to add back fluids after it was determined that we could not add back albumin (a blood product, and out of the question to be done in the home).  She had to be on Hospice service for this to even be considered.  She left the hospital and they did not expect longevity for her. 

I traveled there shortly after diagnosis, after quitting my job, to be with her as I have always lived far away and needed to be by her side.  That was the best decision of my life.  She got little time but in reality she had an amazing time with friends and family coming in to see her after she left the hospital and Hospice became involved.  They showed up all week long on the hour for tightly scheduled visits.  She "lived" to see each and every one.  The 2nd week things changed.  She also got to fulfill a last dream (which incidentally she told me shortly after I had watched a related movie just months before being diagnosed)... to hold a newborn baby.  Such a joy to remember now and I have photos that are amazing. 

These times are beyond challenging, and Hospice was amazing, they supported us so well, despite our sheer overwhelm and not being able to let go.  It does not help to know that this is swift, but later it will in fact be a blessing as this disease is the most ridiculous I have ever know of.  Pancreatic cancer, while terrible, looks like you get much more time to prepare than CC. 

Ultimately you are never prepared, no matter your age.  My best to your family to you and I reach out and offer a e-hug now.  Gather your strength and seek support for you.  I am so sorry this is happening to anyone anywhere in the world and am truly impacted and forever changed by each and every personal story and struggle. 

When you think you cannot go on, gather strength from friends here and know that we are with you.  All my best.  -ljg

Ps.  As a result of quitting my job and caring for my Mother, Patty, I am in the midst of fulfilling a life-long dream of mine, becoming a massage therapist.  Obviously I recommend massage and tough therapy for patients, loved ones and anyone who needs to heal from loss.

Re: Update on my Mom

I am driving with you! I know how it is to be up and down the road under these circumstances, sometimes the driving is therapeutic. Please take time to look after yourself and your dad.

Jan

*my earlier post on this thread disappeared, in the event that is appears also, I am not crazy yet!

Re: Update on my Mom

You guys are the best!

Today was tough.  I got back to Duke this morning at 6:30.  Mom is having some bouts with confusion.  It's so weird.  One minute we are having a normal conversation about my daughter moving into her military base housing (her new husband has deployed to Iraq so guess who's doing all of the moving?   I told him he owes me big time when he gets home!)  then in the next breath she wanted me to find out where those two dogs came from.  (This would be the two dogs sitting on the sink in her room at Duke....sigh)

We tried to do a paracentesis this afternoon after she went to ultrasound and came back with a bandaid covering an "X" marks the spot on her abdomen.  I stayed in the room with the doctors doing the procedure and actually gave advice on how to send the fluid for cytology.(my field of expertise).  I'm going to get my Duke employees badge yet.....

We ran into problems.  Mom had 3 c-sections in the early 50's.  The old kind where the scars run up and down.  We were only able to remove 1/2 liter of fluid which did nothing to help the problem.  We got enough to send for the labs but apparently the fluid is "caught in the pockets formed from the old scar tissue some of which has probably caused adhesions to the bowel.  They've never bothered her or caused problems but we could not safely remove any more fluid.  The physician was excellent because he called a stop rather than risk nicking bowel.  My kind of guy (you've got to know your limitations!)  Tomorrow we are going to reattempt the procedure but do it in real time under ultrasound. 

The doctor was great but in the morning as he was explaining the procedure to Mom and Dad he brought up the subject of "advance medical directives".  Mom and Dad have living wills and have discussed wants but this was the first time we've really had a physician basically asking the equivilent of "if you code, do you really want to be resucitated or just made comfortable?".  I can assure you at that moment even though you think you are prepared, you truly experience an out of body moment. 

I'll be up early and back to Duke by 6:00.  One funny moment.  I usually wear my scrubs when we go to Duke.  #1. Cause you can go anywhere in a hospital wearing scrubs.  (I know every employee elevator)  #2.  It's an outward sign that you probably know whats going on and it does give other medical personnel some level of comfort in knowing you can speak their language.  I went down to the cafeteria when I arrived this morning and grabbed some breakfast.  On the way back to Mom's room I glanced at my receipt and discovered I'd gotten an employee discount.  I felt bad and went back to let the cashier know she'd made a mistake.  She laughed and told me I was an honorary staff member today.

I'll let you know how things go tomorrow.  Tonight I will fall asleep and say to myself....there's no place like home......sigh.  I miss mine but I know my Mom misses hers more.

Goodnight my friends and confidants....

Hugs to all,  God bless you all.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Update on my Mom

Pam,

You are an amazing daughter.  When you said there is no place like home but your feelings would not compare to your Mom's, it made me sad/tear up.  Is not that the truth!  This is an emotional time for all dealing with this cancer and I think you are an awesome daughter doing what needs to be done and driving and being there.  You will never regret those miles or sleepless nights.  Thoughts are with you and prayers too.. Love, Hollie (Sophie;s niece)

10 (edited by marions Sat, 21 Feb 2009 18:16:10)

Re: Update on my Mom

Pam.....I am wishing for you to arrive safely at Duke and for your Mom to be made more comfortable.  Is the medication making her confused or is there an ammonia build up in her blood?  Your story about wearing scrubs is quite amazing...you just gave me an idea...
Be safe and I am hoping for the paranthesis to be successful.
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

11 (edited by Cherbourg Sat, 21 Feb 2009 04:28:42)

Re: Update on my Mom

Hi Marion,

I'm getting ready to get on the road again and just read your post. 

Mom is on almost no medication and this has gradually been progressing for the last 6 months.   

All the medication she takes is an 81 mg. aspirin, her blood pressure medicine and the Xeloda which as been stopped while she in the hospital.  She hasn't taken anything for pain (since she has none most of the time) except an oxycodone in the last two days.  NH levels are normal but potassium was a tiny bit low.  She got some by IV and by mouth since being in the hospital. 

Her Mom suffered from Dementia and I'm wondering if this possibility for Mom has been exacerbated by the trauma of the cancer.

Great!  Another thing to worry about....is dementia hereditary?  I know it is since you CAN get it from your children but I wonder from your parents???...lol  I won't know if I'm having blonde moments or senior moments!!!!!!!!!

Pray that God holds me tightly in his arms today.  I have a feeling I'm going to need it!!!!

Love and hugs.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Update on my Mom

Pam,
Prayers coming your way.  You are a truly wonderful person.  The sacrifices you continue to make for your family are uplifting.
Stay safe on the highway.
Peace,
Karen

Wishing all God's blessings!

Re: Update on my Mom

Hello.

It is amazing to see you have retained your sense of humor.  What an incredible woman your Mother raised!  I hope I get mine back after all this.

BTW, my Mom had some unusual issues and I first attributed it to meds, so we changed them, but later when they returned I researched it and learned about ammonia build-up effecting reality for them.   Totally stands to reason. 

Your sense of humor, which my Mom retained until the very end, means that you have resiliency and I know now that you will be okay. 

All my best to you and your Mom.  -ljg

Re: Update on my Mom

Pam...I looked it up.  Oxycodone side effect in 1% to 5% patients:  amongst others:abnormal dreams, thought abnormalities.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER