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.

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)(f) 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.

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.

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. :)

http://rlv.zcache.com/chemo_brain_bu...62trl0_400.jpg

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.

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. :rrose: Today is her birthday....she is 71.

Hi, Jo.

Hang in there.

I am thinking about you. :rrose:

Knowledge is a good thing
 

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. :rrose:

Tommi

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.

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. :rrose:

Question regarding hair re-growth
 

hair after chemo
 

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

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, 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.

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.

Sub-acute care
 

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.

Wow, Jo. Just so much happening and going on. I do hope that things become clearer for her doctors and then things can go smoothly from there.

I want to make a suggestion to you. I don't know where you live in Florida or I would google it myself, but please consider her going to an Integrative Cancer Center in Florida for her continued oncology needs.

I truly believe in the approach that considers nutrition (and other things, exercise, meditation) as an important part of cancer treatment. They have had unbelievable results in shrinking tumor size and extending lifespans. She may not want to do some of the stuff (exercise...which can be as simple as an ill person moving their arms, or meditation, but maybe she would consider the food).

Additionally, and REALLY important, is that they base their timing of chemo treatments (including that pump we have talked about) around the person's circadian rhythem.

(and yes, this is what that book I mentioned to you is about...integrative cancer treatment).

Take care.

The twists and turns are making me dizzy...
 

Soooo....everything changed, yet again, yesterday...

My mother is being released from the hospital today, which I completely and totally disagree with, but the hospital and insurance company refuse to listen. She will be going to a friend until she can come down here, or be readmitted to the hospital for another procedure....depending on some test results.

Meanwhile, she cannot eat any solid food whatsoever....up to and including broth or jello. She is on IVs around the clock....12 hours of fluids, 12 hours of TPN....so technically she doesn't need to eat or drink....but it still freaks me out.

Luckily, she is going to a retired couple, good friends (and thank goodness she actually made some friends in the last few years, because they've saved her life....literally). The husband has experience with the TPN because the wife is a severe anorexic, and has been on and off of it periodically. So, mom is being released to him....with him as her caretaker for the time being. A visiting nurse will also come to the house each day to check on her.

Here's their reasoning:
They had put her on Avastin. Evidently, this is a chemo drug for metastatic colon cancer, but has some pretty scary side effects.....one of which is an increased risk of GI perforations and bleed outs. So....they can't do ANY kind of a procedure until it clears her system in at least 28 days. They can't do a biopsy, a surgery, not even a tube inside to see what's going on. We are literally just waiting....and they "don't see a need" for her to wait in the hospital for a month.

I'm furious. Why in the hell would they give that drug, with those side effects , to a 50 year Crohn's patient....when GI perforations and bleed outs is what KILLS most Crohn's patients. That's exactly what killed my grandmother at the age of 72....her colon perforated and she bled out on her own kitchen floor.

Holy shit. I know they need strong drugs. I know her cancer is being tough. But THAT one? Christ.

Meanwhile, my paranoia about digestive tract health and fear of processed crap and the importance of fruit and veggies is going through the roof as a result. My poor son.....luckily he likes fruit and veggies...cuz he's up to about 9 servings a day.

Tomorrow is my last chemo treatment! So glad to have this part of it over.

Great job!
 

Woo Hoo! If you lived up the block we could go out to celebrate!

Congratulations on making it through!

That is no small feat! Kudos to you!!!!

:danceparty:

Jo -

Before you drive your kid nuts with the fruits and veggies, buy that book I suggested to you (heh). It will tell you exactly what fruits/veggies to feed him to keep him healthy. That book is the way EVERYONE should eat, not just those fighting cancer/people who don't want a recurrence.

Anyway.....

The constant changing tides must be making you crazy. :-(

All I can say about the Avastin is that they are trying to extend her life. It is the newest drug out there and seems to be able to give people a bit more time. There really isn't anything else that works to the same degree that one does for colon cancer.

Hang in there Jo, and keep posting.

P.S. Do you think if you took a few days off to fly up there to see her that you would feel better?

Progressive's Dirt Brigade Adventurers for the Cure
 

I just got home from a motorcycle ride up in Alaska, the Yukon and the Arctic Circle to raise money for the Susan G. Komen foundation. 16 people from around the country were brought together to do this ride, sponsored by Progressive Insurance. You can read our stories at:
http://http://womensmotorcyclistfoundation.org/blog/
Mine is written under my Biker name: Trapper

We will be accepting donations until December. I know times are hard, but if you can, please donate. So far we have raised about $35,000 and would love to hit 40K. And if you can't, I hope you enjoy reading about our adventure anyway.

We paid our own gas, food and lodgings to enable all money raised, every penny, to go directly to the Susan G. Komen foundation.

If you are able to donate, please click on this link:http://http://www.info-komen.org/sit...0&pxfid=175589
Let's rid this world of cancer!!

I finally got the book ordered :) ....thank you for the nudge and reminder. My brain is mush these days.

So.....the next U-turn....Mom lasted one night out of the hospital and is back in today, following massive vomiting, getting tangled in lines, disoriented, panicking, and her caregivers unable to switch things up properly.

Nightmare.

They are checking back into the hospital as we speak. My sister is getting harassed by Mom's friends to basically toss her life in the air and go move up there to care for Mom (which wouldn't work and won't happen), and now I'm questioning how well she'd do down here given what just happened.

The care coordinator is talking to the doctors, and she may end up in either a rehab care type setting or a sub acute setting (thanks Tommi....I actually knew what they were talking about!)

We'll know more later...in the meantime, I'm back on conference calls, dentist appointment this afternoon, and debating about whether I should just say hell with it and fly out. I can't afford it if she's going to be coming down here soon....but if she isn't, then I feel like I need to figure out a way to get up there with my son.

Ugh.

WOHOO, Debby!! Doing a little happy dance for you! Right before I left for my conference/vacation I went to see our chemo buddy, Becky, on her last day. It was so bitter sweet because everyone got so close as friends yet we are all scared to end up back in there again with a reocurrence. It's so nice to have the support system and know that we all have each other's backs.

September 24th is our big Teal Tea event for ovarian/uterine cancer survivors and their loved ones. So we will all get to have a little reunion celebration and spend time together outside of the clinic! (f)

{{{{{{{Jo}}}}}}}}

I rang the bell today! I even sang 'ring my bell'. :) Surrounded by besties and came home to a houseful of friends. I am blessed.

Wishing everyone a magical weekend.

http://img.xiaba.cvimage.cn/4cbc2986...b26ca00000.jpg

Head's up!
 

Woo Hoo! Awesome!

Happpy dance
 

Man, sorry Jo.

I can't help but wonder if you wouldn't feel better if you went up there, saw her with your own two eyes, and then picked out the rehab place yourself. If she is that ill having to go back into the hospital, I really wonder if it makes sense to drag the poor woman down to your place. Ya know? Would she be even medically safe on the plane? Would it be too much for her? I guess she can answer those questions, though. I dunno. Just thoughts.

Hi Dapper,

I spent all yesterday evening and too much of last night sitting with those same thoughts, and they're on my list for both her and the doctor. I know part of her would like to be here...but I don't want to wipe her out getting her here and then find out she can't stay at home anyway.

My sister is gone....was on a flight at 6 a.m., after blowing up my mother's car (driving an old car like an idiot and blew the head gasket) and starting a huge fight among the circle of friends that has been caring for mom so well....and then dragging mom into it to resolve it. Insanity.

I need to have a long chat with the oncologist and the care coordinator, and then with mom. Rooster and I may be on a plane heading that way soon after all. :rrose:

In happier news.....Congratulations Debby!!!
:cheer:
I'll bet that was a wonderful feeling....and a huge milestone reached. Bravo!

You can find so much more out in person, and , they can see a rational family member. I know this is tough to deal with, but there are some hills ahead.

Has she filled out a living will, Advance Directives effective in her state, and clear as to her wishes if she becomes too ill to make medical decisions. That is something I learned is vitally important when a friend of mine needed it in 24 hours, and did not have it done.


Expedia, Travelocity, Orbitz, . Don't know how long the drive would be, versus airfare X2, but it is an option.

Flights are booked....we're on a plane Wednesday 9/28...going up for 4 days so my son will only miss one day of school.

And, thank you Tommi, I have a list of things to go over with her...those items being on top.

When I spoke to her yesterday she sounded exhausted, and also clearly had no memory of talking to me just the day before and relaying the story of how she ended up back in the hospital.

Her version is very different from my sister's...not surprisingly...and maintains that she was fine and it was everyone else who freaked out.

I just need to get up there and see with my own eyes, talk to the doctor face to face, and figure out what the heck is going on.

In the meantime, the rehab/sub acute discussion is over....the doctor has decided that they're just keeping her in the hospital until they know what's going on and the Avastin clears her system. She feels better about that, and honestly so do I. She clearly feels comfortable and cared for there....and that's probably the most important thing at this point.

I still want to kick my sister's ass though.