Cancer Support and Caregivers Who Are Trail Blazers!

[deb_U_taunt]

I was nice enough to her, it wasn't her fault some unthinking person sent her over. I did make it clear I didn't want anyone else coming over. She offered help and I reminded her I wasn't a member of her church and unless something changed, they don't allow queers in their congregation. She make a quick retreat after that. lol.

Originally Posted by DapperButch

Wow. That is quite terrible. I have never heard of this happening before.

I mean, who would be willing to do this most likely knowing the person they are coming to visit did not give their consent? How did you handle it?

[JustJo]

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

[Leigh]

Originally Posted by JustJo

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

(((((((((((((Jo))))))))))))

I lost a cousin to colon cancer and its an ugly disease (well, cancer is period) but we all know that. I will keep you, Rooster and your mom in My thoughts and prayers while she continues to fight

[deb_U_taunt]

My heart goes out to you and your family. Hope you have a wonderful visit and are able to create some wonderful memories and don't forget to take a lot of pictures.

HUGS and love to you and your's,

Debby

Originally Posted by JustJo

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

[DapperButch]

Originally Posted by JustJo

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

A bit over a week ago I went to see this guy in Chicago, Keith Block, M.D. He runs the Block Center for Integrative Cancer. His theory is how it is more than just chemo that helps fight this fight. It is the whole mind, body, spirit thing. Nutrition is huge. He wrote the book, "Life Over Cancer". http://www.blockmd.com/

I take the supplements they reccommend and eat the foods they reccommend. They achieve amazing results. One thing they do really well is help people be healthy enough to get through their chemo treatments. If your mother is able to focus on reading, she should check it out.

Anyway, natural stuff and supplements are part of his thinking and I know your mother is into that. I looked it up and for nausea he suggests "eating a small amount of grated or finely chopped fresh ginger (if your blood platelets are less than 60,000 cells per microliter, check with a medical professional first), or a teaspoon of gomasio (a seasoning made from crushed sesame seeds and salt), or try sucking on the pit of a umeboshi plum. Gomasio and umeboshi plums are available in the macrobiotic section of health food stores. Herbal teas (such as ginger, alfalfa, chamomile, fennel, and slippery elm), oranges, or tangerines may also help".

I know that you can also get ginger candies to suck on, as well. They had them at my chemo center. She could get some of those (sorry, don't remember the name of them, but I know you could order them off the internet) and suck on them during the infusions.

For me, it was all about the simple, red and white striped peppermint. That is what helped my nausea. Peppermint tea helped me too.

Hang tough.

[Tommi]

Originally Posted by JustJo

J.... hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

and more good memories for you too.

Wishing you the best on this journey Jo, while she is here and after...

[deb_U_taunt]

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today.

[JustJo]

Originally Posted by Debby

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today.

Congratulations on being almost done....and hope it goes smoothly for you today.

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

[Tommi]

Originally Posted by JustJo

Congratulations on being almost done....and hope it goes smoothly for you today.

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

Yes Jo, it is very common in chemotherapy patients. The port-a-cath is normal. Especially since your Mom has lost so much weight and not eating well. It's easier for routine treatment, and if there should be an emergency, they have direct access should the veins collapse.

Per Wikipedia
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

[DapperButch]

Originally Posted by JustJo

Congratulations on being almost done....and hope it goes smoothly for you today.

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

Should I feel insulted? Did you miss the "I had the exact same cancer/treatment as your mother" information somewhere?

Yes, that is normal.

The infusion is for around 4 hours and then you wear the pack for 48. When the pack becomes empty (there is a battery that starts beeping), you go back to the infusion place and they disconnect you (some insurances pay for a nurse to come to your house). As a side note, you don't have to run over to the facility the moment the beeper goes off. Just remove the battery and get over there when you can.

For me (and evidently a number of people), the exhaustion would set in immediately AFTER the pump stopped. Subsequently, since I worked full-time, I would have my infusion Wednesday morning, then have the pack from Wed-Fri. I would get it off on Friday (I would run over to the infusion place...across the street from my job... at lunch time), and then sleep all weekend. It worked out great. You should ask your mom her "tired time", so your vacation "events" can be scheduled around it.

[JustJo]

Thank you all...and sorry Dapper...my brain has gone dead
After hearing from Entycing and Tommi I had one of those duh moments and smacked myself in the forehead...

She's being readmitted to the hospital...her friends have been calling me...I've been trying to reach my sister then realized she's at Burning Man (and therefore out of cell phone range) until the 5th or 6th...basically losing my mind.

I'm waiting to hear what her status is this evening...and trying to figure out if I need to get on a plane right now or what.

More than anything I wish I simply didn't have to deal with this...which then jumps up and smacks me as an incredibly selfish thing since she is dealing with much worse. Her friends are putting 2 and 2 together and realizing that she's told each of us one tiny bit of information here and there, claiming she doesn't know more, and keeping us in the dark about some things that she's told others. Right now, we're comparing notes...and the full story isn't looking good.

The oncologist's office weighed her in at 96 lbs this afternoon and doesn't know why she is having pain in her abdomen 2 months after her surgery. They did an x-ray that showed nothing...more tests to come.

[deb_U_taunt]

It is normal. The reason I didn't get a port because of I won't be doing hormone treatments after chemo and they did't need as many blood draws. I can tell you I wish I got a port early on. (The nurse didn't get it first try today, but only ONE left!!!!!!!!!!)

Originally Posted by JustJo

Congratulations on being almost done....and hope it goes smoothly for you today.

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

[IttyBittyFem]

Originally Posted by Debby

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today.

Congrats on ONLY ONE MORE treatment. You must be sooooo excited.

Please send me that Nurse when you're all finished that found the vein on the first try. I could use someone like that, what a pleasure that would be! <wink>

[IttyBittyFem]

Is it possible to actually get blood from the Port? Sure would make life ALOT easier.

[JustJo]

So I finally got permissions organized and got to speak to the Oncologist's nurse...the news is not good, but it feels good to at least have the real information.

Her cancer is stage 4, having spread to lymph nodes and also the membranous tissue (can't remember the name) that covers the intestines. They removed a lot of lymph nodes when they took out the tumor, but the current chemo is to ensure that the rest of the lymph system is cancer free.

After that, if her strength allows, the next step is another major procedure to "belly wash" the membrane. Evidently the details of this and her condition (after 50 years of Crohn's disease) mean that she would have to go to a specialist in NYC.

If she is not strong enough for the next procedure, then chemo becomes a semi-permanent thing to keep the cancer in the membrane under control.

Their biggest concern right now is to keep her hydration and nutrition levels up so that she can complete the first round of chemo (through the end of the year), and get her strong enough to do the next step. If she isn't strong enough, then it can't be done...and then it's just a matter of time.

The nurse said that the oncologist describes her case as "extremely complicated" due to the long term Crohn's and the condition of (what remains of) her small intestine.

She will be going home (once strong enough) with an IV of fluids and TPN to wear at night. This should help keep her baseline nutrition up enough to keep her stable, and give her a chance to gain some if she can eat solid food and keep it down.

It feels pretty awful, and not terribly hopeful...but at least I feel like I have the truth now...and that helps. Today is her birthday....she is 71.

[Dominique]

Originally Posted by IttyBittyFem

Is it possible to actually get blood from the Port? Sure would make life ALOT easier.

There is so much I don'r remember, funny how the brain protects you. And it's been 10 years. Things change (daily).

My late Partner (for those who don't know and wonder why from time to time I pop in here) of 14 years had ovarian cancer. She was so advance staged when it was actually diagnosed (she ignored all symptoms) and made the decision to refuse treatment and passed away quickly and relatively peacefully. Sunday is Ovarian Cancer rememberance day (sept 11) double whammy.

The port, if I am remembering correctly, is an inlet, not an outlet. They don't extract information from any place they input medicine etc. so as to not risk a chance of a false read.

Yes, after all those bruises on the arm and then the hand, you alwost wish they'd leave a port in to remove, but I guess that requires alot of suction
until you actually get the blood. You don't want blood thats in the port. It's no longer fresh, no O2. Rambeling Sorry.