Ugh...so many things have been discussed that she and I BOTH got this wrong. It is a stomach tube, but it is located between the stomach and what's left of the small intestine, and is to control outgoing rather than incoming.

Evidently it will help them clear blockages, and also allow her to cirucumvent the intestine entirely (at will) when she is feeling discomfort.

So...now she is hooked up to 3 bags....TPN in through the PIC line, the original ostomy bag and now the new one....that I don't even know what to call.

Her TPN is increased to about 20 hours a day, and she will never be off of it.

She is feeling like a monster....with every step of food intake and digestion being controlled by valves and clamps and bags and needles.

On the plus side, this blockage was cleared and she is no longer having any pain.

The chemo will start later this week...since the latest scan shows that the liver lesions are now 11 mm and 8 mm, respectively....when they were so small they didn't even show on a scan a few months ago.

Oh, Jo this so sucks. I feel so terrible for her.

It is this kind of stuff that worries me (about me). Yes, the CAT scan I had a month ago said there were no tumors. This was really meaningless to me due to the above. That is what my eating (most often successfully), vegan is all about. The hope is that eating in this way (plus doing some other things), will make my body less hospitable to cancer. The hope is that those small tumors don't grow. I am aware, however, that no matter what I do, it could still happen. Additionally, I am aware that there are people who have undetectable tumors that never grow no matter how they eat or what their lifestyle.

You remain in my thoughts, Jo.

Thank you Dapper. :rrose:

I completely hear what you're saying...and it's scary as hell.

The other part of the story though is that my mother has been a Crohn's patient for 50 years....lived on butter, bacon, and....when she was younger....Coke, donuts and chips.

She became nutrition conscious very late in life....and never took good, regular care of her Crohn's disease....starting and stopping medications randomly, skipping checkups and tests, even taking veternarian grade prednisone at one point for over a year because she was "sick of doctors."

As harsh as it sounds, I think she didn't help herself any. By contrast, you're taking the right steps...eating right, supplements, taking care of your health in general...and trust that will make a difference.

Hugs,
Jo

Thanks for saying this, Jo. Recently, I have been struggling with seeing the usefulness of not eating the food (read: meat, cheese), that I love. You sharing the part of the story about your mom's tumors originally not showing up, only to show up later reminds me as to why I am doing this. Thank you. (f)

(As an aside, I am aware that not everyone agrees with my belief that eating vegan+fish, helps fight/keep away cancer. No offense/disrespect meant to those who sees things differently.).

Just a reminder: Please make sure that your younger family members are educated about gardasill, and the damage HPV can wreck--my niece, Meaganne, will be moving on from this world in the next 24-48 hours due to cervical cancer from HPV, she is 23 years old.


JustJo: I think the term you were looking for is gastric drain--it is frequently placed in the jejunum, but is sometimes placed in the stomach or duodenum. Placement in the areas below the stomach allow for drainage of bile salts, which can ease nausea, vomiting, and irritation.

UPDATE
 

Thank you....gardasill is not administered to women over 30, so it's important to get the series prior to that...forgot to mention it earlier.

I know you all have to be so sick of hearing from me :(

Yesterday evening I had a long talk with my mother, who was having a total meltdown. It was incredibly stressful trying to be there for her as she was raging and crying and scared and all of the other stuff that goes along with knowing your days are numbered and that you're in pain.

Anyway....trying to figure out next steps...and spoke to the doctor this morning. She has 2 months "if we're lucky." She cannot go home, period. She cannot eat food, period. She will have horrible pain from here on out and they will do their best to help control it, period.

Fuck.

They believe they can get her off the IV pain meds, which she is hitting every 15 minutes religiously, and onto oral and patches for pain. They believe they can get her strong enough to fly down to me.

And then it's on me, period.

I have a call in to hospice.

This also means I get to have my crazy, fucked up narcissist of a sister in my house so that she can say her "devoted daughter and where's my share of the loot?" goodbyes.

I am angry, upset and just feel sick myself.

So...welcome to 50. First task of the next half century....help your momma die.

Fuck.

Jo, my heart goes out to you and your Mom. I can certainly understand how she wants to stay in her home and not be dependant on anyone else but that just isn't an option at this point. I salute you for being willing to be there for her at this most difficult time and have her at home with you. This will probably be the toughest thing you have ever done and yet I bet that you will be glad that you were there for her. Keeping you all in my thoughts and prayers. Jean

I'm very, very sorry, my friend. Know I will be thinking of you and I am around if you want to talk.

Peace to you Jo
 

Hey Jo,

Hope you are okay today. This is the crises we never see coming, and it drags, yet drowns out all sound and reality with the rush of knowing the outcome.

This time next year, the spring flowers will start to bloom , the color will come back into your landscape, and your Mom will not be hurting and suffering.

and ...as for your sister, the drama of her trauama will be different next year, and you can send her Birthday and Holiday cards, and not hear the Me Me Me what about wonderful me.

Well, if you want to get away to Disneyland , just call. :) :hangloose:

Keep us posted Jo

JustJo,
This is tough. I had to do that with my mother when I was 21. I went home to take care of some of her needs and missed her passing. She had wanted someone to be there and I wasn't. I carried that guilt for a long time.

Be with your momma while you can. Be strong for her.

When it is done, you can have your own meltdown.

Know that we will be here for you through it all.

Our prayers are with you.

(((((Jo))))) Honey, i am so sorry to read this...yes, i've been there too and i wish i had some magic words to make this easier for you...

my Mom died from Pancreatic Cancer in 2007, She never talked with me about what she was feeling...this haunted me earlier this year...i think she was trying to avoid a similar meltdown to the one your mom had. Still not knowing how she was feeling bothered me. No one understands how this feels until they've walked this painful and frightening path...

There was nothing that could be done for Mom and i felt so helpless. She made me promise i'd help her die if she ever got to the point where she couldn't take it any more. Hospice was simply amazing for us and i hope they will be the same for your mom.

And NO i am certainly NOT sick of hearing you post about your mom...you have to talk about this...and i'm here if you need a shoulder or an ear...

Like Clay said, we're holding you close...sending much love, light, energy and prayers to you, your mom, your family and Snack...

Thank you so much everyone. :rrose:

Mom will not be able to go home with hospice care after all. The hospital room has been blocked to all but family, her roommate has been moved, and my sister is spending the night in the other bed for tonight.

They have basically said their goodbyes....mom knows her affairs are all in order....and she is leaving us very soon.

I have believed for some weeks that she was holding on for two things....to have decisions resolved and confirmed about her things and her property....and to see my sister.

Both of those have been accomplished....and now we wait.

JustJo,

I am so glad you and Rooster have had quality time with your Mom in Florida. You worried so much about her, and I know this waiting is the hardest thing to go through.

We will be here and write when you can, as much as you can. You and yours are in our thoughts. :stillheart: