Cancer Support and Caregivers Who Are Trail Blazers!

[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 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.

[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.

[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.

[DapperButch]

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.

[JustJo]

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.

[Tommi]

Transporting Jo to a Zen garden nearby.






This cancer stuff is bad, but the crazies associated with it are worse. Ya never know from day to day, wha t is around the corner...so, Breathe deep.

[deb_U_taunt]

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