Cancer Support and Caregivers Who Are Trail Blazers!

[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.

[DapperButch]

Originally Posted by JustJo

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.

Ok, so now I feel like an asshole for yelling at you. Sorry.

Let me tell you the first thing that came into my head when I read your post.

2 weeks after my surgery I was readmitted to the hospital because I had a blockage (read: could not poop) due to adhesions. This excruciating pain just came from out of no where and I had just gone to the bathroom only a couple of hours earlier, so it really made no sense.

It is more common for the adhesions to develop a year after surgery; thus, the reason the fuckers in the ER didn't seem too concerned about the amount of pain I was in until they did a CAT scan.

Find out if your mother has gone to the bathroom.

[JustJo]

Originally Posted by DapperButch

Ok, so now I feel like an asshole for yelling at you. Sorry.

Let me tell you the first thing that came into my head when I read your post.

2 weeks after my surgery I was readmitted to the hospital because I had a blockage (read: could not poop) due to adhesions. This excruciating pain just came from out of no where and I had just gone to the bathroom only a couple of hours earlier, so it really made no sense.

It is more common for the adhesions to develop a year after surgery; thus, the reason the fuckers in the ER didn't seem too concerned about the amount of pain I was in until they did a CAT scan.

Find out if your mother has gone to the bathroom.

I think we were typing at the same moments and you, my friend, are anything but an asshole.

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

[DapperButch]

Originally Posted by JustJo

I think we were typing at the same moments and you, my friend, are anything but an asshole.

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

Maybe in the end this hospitalization will be a good thing. Maybe it will get her strength back up resulting in her chemo treatments taking less of a toll on her. Something like 1/3 of all chemo patients have to quit due to weight loss and other side effects.

Please let us know how things are going.

[deb_U_taunt]

Glad to hear she is being admitted, so they can keep a watch on her. They can rehydrate her fairly quick.

Originally Posted by JustJo

I think we were typing at the same moments and you, my friend, are anything but an asshole.

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

[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.

[DapperButch]

Hi, Jo.

Hang in there.

I am thinking about you.

[Tommi]

hey Jo,

You learned a lot of stuff>
I am sure it is heavy, but at the same time, it may be better than the vacuum you were in. There will be good days ahead.

Just keep deep breathing, and loving.

Tommi

[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.

[JustJo]

Well, we're one step forward, two steps back...

I called my mother yesterday evening to discover that she had just come out of the operating room. Evidently the unexplained pain in her abdomen was continuing...the x-ray showed nothing...so they did a scan (CAT, PET...I'm not sure which now) and it showed a growth on or in the tube that connects the kidney to the bladder.

A few months ago, as part of the surgery removing the tumor from her intestine, they had also put a stent in between that kidney and the bladder, because the tube was blocked and the kidney had stopped functioning. The stent had come out later and things appeared to be working fine. I guess not so much.

They haven't told her yet what the growth is...a consultation will happen later today...but it could be another tumor.

My sister gets off the plane in Syracuse about 11:30 a.m. today. She got a one way ticket, because we have no idea when she'll be going home.

[IttyBittyFem]

It's a silly question, but has me a bit curious.

Has anyone else noticed a change of texture in your hair when it grows back? Not only is my texture different, the color completely has turned much deeper from the normal blonde to almost a yucky mousy light brown. Am I the only one? Do y'all think this is temporary or permanent?

[mustangjeano]

Hi Itty, After 4 mo. of chemo , my hair which was mostly grey, grew back with a lot of dark brown hair that was much more curly than my usual hair. In my case it was temporary and about two haircuts later it was back to grey.
Jeano

[DapperButch]

Originally Posted by JustJo

Well, we're one step forward, two steps back...

I called my mother yesterday evening to discover that she had just come out of the operating room. Evidently the unexplained pain in her abdomen was continuing...the x-ray showed nothing...so they did a scan (CAT, PET...I'm not sure which now) and it showed a growth on or in the tube that connects the kidney to the bladder.

A few months ago, as part of the surgery removing the tumor from her intestine, they had also put a stent in between that kidney and the bladder, because the tube was blocked and the kidney had stopped functioning. The stent had come out later and things appeared to be working fine. I guess not so much.

They haven't told her yet what the growth is...a consultation will happen later today...but it could be another tumor.

My sister gets off the plane in Syracuse about 11:30 a.m. today. She got a one way ticket, because we have no idea when she'll be going home.

Jo! I just saw this. I have been wondering how your mom was doing, but didn't want to ask again. Please give us the update if you have one.