"The Scoop" - what is going on with Lisa - 1of2

[MGordon]

Hello Angels

Drat - I just wrote this really long post to fill you all in and somehow when I went to post it, it disappeared. Back to the keyboard, and I'll try not to cry this time. (I think my membership to the Man Law Committee is being revolked!)

I have spoken with Lisa and she has given me permission to share what is going on. I am sorry for this delay, but I wanted to repsect her privacy if that was her wish. Warning - this might become a lenghty post and could be repetitive for some of you, but here goes.

We have admitted Lisa into Home-based Hospice Care, and suspended all chemotherapy treatment. Not an easy decision, but hopefully one you'll understand when I have finished. The story goes back a few weeks and you are probably aware of the fact we had to place a stint into Lisa's Common Bile Duct (bypassing her Gall Bladder). Basically, her Common Bile Duct had succumbed to excessive pressure from her inflamed abdominal lymphatic system. With the cancer moving into the lymphs, there has been a great deal of swelling and pressure.

We placed the stint because Lisa had developed severe jaundice and her billirubin level had crashed. The "collapsed" Commmon Bile Duct was causing her stomach to hold bile and not drain. Made her extremely sick and uncomfortable. The good news was that we saw and immediate improvement in her jaundice and her billirubin returned to normal. The bad news was she did not feel any better - I think she described it to you all as "poopy". The worst news was that she was still constantly sick.

We had to admit Lisa into the Cancer Care Center at our hospital and start a series of tests. She was in for seven days and the end result fo these tests was the discovery that her stomach ahd stopped being a stomach. For some reason - most likely related to the issue with her Common Bile Duct, her stomach stopped digesting anything and was simply holding everything. Every time she ate or drank she would throw up becasue there was nowhere for the food/drink to go. The stomach was distended and filled with unprocessed/undigested food - AND MEDS.

The doctors started her on a treatment course using a drug called Reglan. this drug "jump started" her stomach and we were released for the hospital. Only to go back two days later. This time for four days.

To be continued

[MGordon]

We do not KNOW why, but we suspect becasue of the lack of digestion for weeks (?) that Lisa's brain was not getting enough required nutrition. What happened was Lisa slipping in and out of coherent thought. She is experience severely depressed cognitive ability and bouts of severe confusion. She has lost the ability to dial a phone, adjust hot/cold water for a shower/bath, cannot type or concentrate enough for posts and e-mail, and has severe loss of balance. Lisa falls 2-3 times a day - with people there to help her! - and her body is covered with bruises. Each and every bruise screams at me! With all of this going on, she has become so weakened she cannot get up if she falls and requires assistance. In fact there are times when I have had to lift her out of the bathtub and carry her to the bedroom.

But please keep e-mail and posting. Friends, family, and myself are reading these posts and e-mails to Lisa and we will be her response mechanism. Just relaize the obvious privacy issues when you mail her, and please understand the delays.

Right now, we are under doctors orders that Lisa cannot be left alone, and several friends and neighbors are stepping in to be God sent assistance for me. Of course, we are now starting Home-Based Hospice Care and have In-Patient Hospice available a few miles from home if we need it. I am filing for a Leave of Absence from work and will plan on attacking my role as primary care giver with more available time.

Our goals for entering Hospice are:

A)Drastically increase Lisa's quality of life

B)Eliminate her pain and nasseau (sp?)

C)Rebuild her strength with the goal of returning to treatment

D)In a worst case scenario - prvide Lisa with the diginity she so richly deserves!

As I explained to Lisa, I believe her body is just crying for a TIME OUT. Three years of daily chemotherapy (pick a letter of the alphabet and we've been on the chemo drug that it starts with ;-0), weekly infusion of chemo and adjuvant therapies, test after test (Bone Scans, MRIs, PET/CT Fusion, CAT, etc) includng ingesting the isotopes and dyes for these tests, as well as whole brain radiation. Her body needs a break - for now. But right now, she is not strong enough (mentally or physically) to continue the treatments. Inexplicablly, tests also reveal increased white matter in her brain, even though her WBR was almost two years ago - this can also be contributing to these issues.

To be continued

[MGordon]

IF we can get her to rebound, we will once again be placed into the Lapatinib/Tykerb trial. It really helps that our onc is running the trial (primary investigator) for the entire state of Colorado, and has swore to move heaven and earth to get her back onto Lapatinib/Tykerb when we can. During the short amount of time we were able to participate in the trial we actually saw a decrease in Lisa's tumor markers. Might not like much, but for three years they have never decreaee, only increased each week. This is a light at the end of our tunnel and we hope this is a great sign for everyone else as well.

That is what we know for now. Please feel free to e-mail/post with questions and concerns and be patient with response times. Please, continue to pray, send postivie energy, bless, transmit love and light, think positive thoughts, and whatever else your personal beliefs systems hold true - in the direction of Lisa. She can use it. But most of all, take care of yourselves and your families, stay strong, and kick this ugly disease's butt - that more than anything else is what Lisa would want for each of you.

God Bless

Love and Light

Mel

[AlaskaAngel]

Thank you for posting so completely about Lisa in such difficult times, and for doing all that is possible to help her. I hope she gets all possible rest. Tell her we are thinking of her and holding her in our thoughts.

Sincerely,

AlaskaAngel

[StephN]

What HELL our poor Lisa has been enduring! Well, at least they found out the "rest of the story" about her stomach. There must have been a whole platoon of specialists working on her case to sort all that out.
No wonder she felt "poopy."

Good to know that she now has the opportunity to get all the help she needs and get her stomach working again. Please let her know that I will be doing some leg lifts and light arm weights for her!

Hopefully you have a nutritionist that can advise on the right foods and supplements to get the enzymes back in sync. I know it is a baby step at a time. You did not say what intervenous nutrition she was getting, but she must have had some at the hospital.

Hey, Lisa. I know you can get over this major speed bump. What a shinning bit of news that you had be able to have some Tykerb and see results. I will hold that thought for you.

[Andi]

I, too, will keep Lisa in my prayers. She has been through such an ordeal, I pray she will be able to get back on Tykerb soon.

[tricia keegan]

Lisa I did'nt get to know you very well but I pray and hope you can get over this and we can put that right in the future.

I'm so sorry for all you've been through and all you're going through and will be praying and holding you in my heart.
Tricia

[RhondaH]

PLEASE give Lisa my best and PLEASE let her know that prayers are forthcoming for not only her, but you also as I KNOW this is difficult for you. Take care and God bless.

Rhonda

[Mary Anne in TX]

Hi Lisa Girl!
I just took my little puppies for a walk around the RV park here in San Antonio and got some exercise for me and you! I'm here a day early to have treatment and appt. with my onc. tomorrow. He's at the Breast Cancer Symposium today. CTRC is one of the 2 sponsors! I tried to sneak in to meet the Mighty Her2 Board Gang, but they caught me and nicely threw me out! Oh well, they are there learning and influencing for us! And my Dr. K is there to find that magical news for some of us San Antonio fighters!
I lived in Wyoming for 7 years and am picturing you with crispy weather and a great view! I think I even saw an elk or 2!
Most of all I'm believing with all my heart that you're getting the much needed rest your body deserves! What a machine it has been. It's fought in all kinds of weather and on all battle fields. A little vacation will be just the thing it needs!
Lots of love and the power of faith coming to you from my little RV home here in Texas.
mary anne

[lexigirl]

Hi Lisa,

I believe that you are getting some well deserved rest. I am hopeful that you will be able to restart your tykerb soon. I am happy to read that you responded so well! That is great news!

Please know that you are in my thoughts and prayers. I pray for comfort and healing for you.

Hugs and Prayers,
Lexi

[mts]

Lisa,

Splashing waves with ocean sprays and moonbeams to you all the way from Florida...!!!

Thinking about you,

Maria (MTS)

[rinaina]

Lisa, you are in my thoughts and prayers each and every day and my hope is that this is just a major "poopy" but short setback that you will rebound from. You have endured so much so keep fighting and never give up, never! I look forward to hearing every small improvement one step at a time until you are well enough to restart Tykerb which was helping you. I know it isn't easy but try to stay strong and believe that this too shall pass. We are rooting for you with all our positive vibes. G-d bless.

[Julie2]

Oh! God Lisa we so want you to come back to normal and start the Tykereb trail and be yourself again.

Julie

[sherri]

Hi Lisa and Mel,

My thoughts are with you and I ask for a miracle for Lisa to get well soon. It's Xmas time and miracles happen all the time.

Love and hug,

[IRENE FROM TAMPA]

Lisa - you stay strong my friend and fight this-

You will be surrounded by light all around you and love from all of us on this board.

My prayers are strong for you and my constant thoughts for your strength to return.

Irene

[tousled1]

Lisa, My heart goes out to you. You have endured so much because of this dreadful disease. I'm praying that all your body needs is a rest and that you will soon be able to resume the Tykerb. You have been and continue to be an inspiration. You are very fortunate that you have Mel there to assist you as well as family and friends. I will keep you in my prayers.

[eric]

Mel,

Lisa has certainly proven to be incredibly resilient and positive through very tough times. I will hope and pray that she is able to at least one more time. I hope you are holding up ok as well. I know it's not easy.

Eric

[Audrey]

Lisa and Mel, I will keep you both in my prayers and send some long-distance Reiki energy your way. Lisa has been such a positive force on these boards for years and I'm sure she knows we're all pulling for her now more than ever. Thanks you for keeping us posted on her condition.

[sassy]

Mel and Lisa,

Keeping you in my thoughts and prayers.
________
CumforsexyKas cam

[Bev]

I'm hoping that now the stomach issue is solved, Lisa will recover enough to resume Tykerb. So sorry all this is happening, will keep praying. Thanks for keeping us posted. BB