Cancer Support and Caregivers Who Are Trail Blazers!

[DapperButch]

Originally Posted by Debby

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!!!!!!!!!!)

Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

My every other week blood draws were taken from my arm (not port). There shouldn't be any hormone treatments afterwards (for the standard colon cancer chemo tx).

Originally Posted by JustJo

Ouch....I can only imagine how rough that is....the port does seem easier and makes a lot of sense. I'm so glad you have only one left!

I would much prefer to not have had the port. Even if there was no 48 hour infusion period...having that thing in my chest...being reminded every minute that I have cancer. No, would have much preferred no port. Plus, the surgery to put it in and the surgery to take it out. Plus, the two scars (one from each surgery). No, definitely would have preferred no port.

Me too....her BP is back up to 113 over something....it was down to 90...and she sounds better. Her weight of 96 was fully dressed....can't even imagine that for a woman who has been slim her whole life at 145ish.

They've already gotten 2 quarts or liters (whichever it is they use) of fluid into her, and the TPN to be started shortly. I'm sure that will help a lot.

I am glad you got some info. on your mom. I hope she starts getting better quickly.

[JustJo]

Originally Posted by DapperButch

Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

My every other week blood draws were taken from my arm (not port). There shouldn't be any hormone treatments afterwards (for the standard colon cancer chemo tx).



I am glad you got some info. on your mom. I hope she starts getting better quickly.

They do blood draws from her arm too...and I guess she's having problems with her veins due to the dehydration.

Preliminary info says that she'll be in the hospital at least until early in the week, then going home with the TPN and IV fluids....I'm guessing done through the port (?)....but long term. And they'll set up nursing services for her at home when she does go home, too.

The thing that may come into play is the tests being done to determine why she still has pain in her abdomen....and whatever those show.

When we spoke last night, she was glad to be back in the hospital...and I'm relieved that she's there too so they can get a handle on this weight loss and dehydration.

[Dominique]

Originally Posted by JustJo

They do blood draws from her arm too...and I guess she's having problems with her veins due to the dehydration. Your guess would be correct. A big indicator of dehydration, is when a blood draw is attempted, and the vein, rolls. Sometimes they have to pull out and start over. Also, each
stick, causes a little bit of scar tissue to form. Sticking, hitting the scar tissue, causes the needle to clog. The process has to start all over again. Hopefully this will explain *why the port* a little better for you too.

When we spoke last night, she was glad to be back in the hospital...and I'm relieved that she's there too so they can get a handle on this weight loss and dehydration.

You've mentioned she is stoic. I'm sure she has issue with asking for help. Feels like somehow, she is burdening people who want to help....who really do care for her. (common) you almost have to force Home Nurse Care. This will help her tremendously and ease some of your worries. Someone trained, will be making the assessment of her health. And conveying that to you. Not a friend with good intentions, wanting to abide by mom's wishes to not burden Jo with this (refer back to won't ask for help) Hang in there, this fork in the road~ try to think of it in terms of an
intervention~

When you don't feel well, and you live alone, the last thing you want to do is eat. Sometimes fatigue is greater than hunger, and walking to the kitchen to get a box of cereal, to eat dry, just isn't worth it. Dehydration can occur from the obvious manners...sweating (fever), diabetes, Diarrhea...and even what a patient under going chemo thinks is *just from the chemo*, lots of fluid gets lost. Vomiting (?) Nausea can come from dehydration and or the chemo. The inability to eat or drink will bring about weakness. Eating, well, foods contain water. It's all pretty cicular, as much as it makes sense Jo, it doesn't make sense. Because it's cancer. And as I've seen it written many times. It sucks.

Dehydration goes hand in hand with the electrolytes and she is in the right place to get everything balanced out. Here, since Mrs. Jo is stoic, and won't admit pain...they will know, pain makes the heart race faster. Usually, when the pulse goes up, the blood pressure goes down. And the opposite, if the BP goes up, the pulse comes down. Mrs. Jo
and her *Oh, I'm ok* has made it a little harder for them to treat her. This way,she will be monitored, and with the help of the fantastic advancements in science and medicine. They'll be able to help her much better. Sux that it took all of this, to get to this point. Patients have rights. Hello Hippa.

Enough from me. Thinking about you Jo.

[JustJo]

You're so right Yellow Band...thank you. Having the iliostomy (and no more colon) makes the dehydration issues so much harder, too.

She hates asking for help, and the only place she seems to be willing to take it is (literally) in the hospital. I think having the doctor order at-home nurse care will help too....the whole "doctor's orders" thing is easier for her to swallow.

[deb_U_taunt]

Originally Posted by DapperButch

[COLOR="Blue"]Jo's mom has the port due to having 48 hour long chemo infusions. The chemo pack is attached by a tube into the port in her chest.

Sorry I was referred to why I didn't get a port, with chemo brain I don't always make a clear point.

[Tommi]

Originally Posted by Debby

Sorry I was referred to why I didn't get a port, with chemo brain I don't always make a clear point.

Debby,
I was behind a car with this bumper sticker this morning.

[deb_U_taunt]

Originally Posted by Tommi

Debby,
I was behind a car with this bumper sticker this morning.

Wow, I so need that bumper sticker. lol I have been so unfocused and am usually the queen of multitasking. Now, I am lucky if I can remember what I went into the other room for.

[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.

[DapperButch]

Originally Posted by 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?

Originally Posted by 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

Hi, Itty. With my type of chemo I didn't lose my hair, it just thinned out some.

My ex-partner's son (who was 11 at the time) had dark brown hair that grew back in a dirty blond and a bit wavy. I believe the new color remained, but I am not sure about the wave.

[JustJo]

Originally Posted by DapperButch

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.

Hi Dapper....sorry, just saw this....

Mom is still in the hospital, and we're actually expecting some more test results today from a blood test that is supposed to indicate cancer...I can't remember the darn name now....CE something, maybe...it's all running together.

Anyway...she'll be in the hospital "for awhile" yet. They had given her some medication that was supposed to help with the nausea, but ended up completely stopping all of the parastalic (sp?) action in her intestine, causing additional problems. That is now clearing, but she still becomes ill and has intense pain from so much as 1/3 cup of jello.

There is a stent from the kidney (that had stopped before) to the bladder, and something is going on there that they can't identify.

There is also another blockage...they've done x-rays, PET scans, CAT scans and something else....but still can't determine what it is with certainty, although they expect it is another tumor.

I'm getting sick of hearing "idiopathic"....which simply means they don't know what is going on and can't identify the cause of the problem.

The membrane that covers the intestines (again...can't remember the name) is cancerous...which is why they need to do the "belly wash" procedure...but can't do that until she's much stronger. They think that the cancer may be spreading from there, but can't be sure....and say that it doesn't usually spread so fast from there because there is little blood flow.

The chemo she's doing now is because of the cancer in the lymph system, and they may have to alter that depending on what's going on now. They probably will need to do a biopsy, but are taking a "wait and see" approach for a few days to see if it's a post-op lesion that may clear itself.

She honestly has wonderful doctors, and is a top-notch hospital....but they're sounding baffled to me.

My sister, who went to help, is making things worse rather than better...stressing out everyone around her and causing drama at the hospital....so much so that the doctor told my mother that he doesn't think she's an appropriate caregiver....and that Mom should come to me when she's ready to go (because her house, being a 200+ year old farmhouse) is not sanitary or warm enough for her to live in right now.

We're falling through the cracks on the "going home" part....Mom can't go to assisted living because of the IVs that need to change every 12 hours (probably for the rest of her life)...can't go home because she can't physically manage without help, especially in her house....and the only other option is a nursing home...which isn't appropriate because she doesn't need that much...she can take herself to the bathroom, she's functional, she can walk, etc. (and also because I have horrors about nursing homes and won't allow it unless I simply can't cope).

So....right now it's a waiting game. The doctors are keeping her in the hospital, trying to figure out what's going on. When she's ready to go home, she'll come to me...at least for the winter...and we'll all regroup and see what's what in the spring.

They told me that, given her diagnosis, the 5 year survival rate is 6%....most of which are the younger, stronger patients...and average lifespan from diagnosis is 28 months...again, with younger, stronger patients on the high end and patients like my mother generally on the lower end. With 50 years of Crohn's disease in her history, her digestive tract is a nightmare.

She has completed paperwork to donate her body for Crohn's research and/or colon cancer research. In a weird way, that's making me feel better....because perhaps it will help them learn enough to help others with these diseases.

[Tommi]

Check out hospitals that have Sub-acute facilities orn Skilled Nursing Centers that have sub-acute in your area. My friend Milana has been in sub-acute care due to esophageal cancer and complications due to the feeding tube in her stomach. She has medicare and applied for state medical.
She is ambulatory, and goes now is able to go out to her Doc's office for chemotherapy, and for PET Scans , etc. She went into the hospital to have the feeding tube put in June 15, 2010 and went to ICU because of compliactions, and has been in Buena Park Nursing Center sub acute-care unit since Sept 2010~~for a year, and in sub-acute for a year. Doc's said she has 3 mos to live. She is now back to being on the sub-acute patio everyday, in ths sunshine, pushing her wheelchair in front of her , with her O2 tank hanging on the side, and her favorite magazines. She meets the other patients out there and they play cards. With Respiratory and a nurse sitting by.

She does Wi Bowling everday, and crafts 3 times a weeek, bingo every morning. She is still sick from all she has gone through, but she has a lovely community of friends there, and doctors, RN's and LVN's and the best NA's I have ever seen. It took some looking until we found a place that would take her, and was clean, and had all she would need. Best regards, Tommi

Check with your state health dept for a list of approved places, or, in the state she lives in, and check them out physically and on the net/reviews.

It is a tough time for all, but if there is a will to live, like Milana , it is what they can do.

.
What is skilled nursing sub acute rehab care?

A. Sub acute care is comprehensive inpatient care designed for someone who has an acute illness, injury, or exacerbation of a disease process. It is goal oriented treatment. Sub acute care is generally more intensive than traditional nursing facility care and less than acute care it requires treatment plan for a limited time period (several days to several months), until the condition is stabilized or a predetermined treatment course is completed.