Re: Irene

December 3, 2004

Narice,

I hear you, but this is over. I suspected that the two antibiotics

were the causing the stomach pains, and I seem to be right. Just

talked to my brother this morning and he doesn't even sound sick

anymore. I think they'll release him today as they see no reason to

keep him. He sounds like the pre-hospital rudy. =)

Narice, thanks for your empathy.

Irene

> I read your post below and wanted to cry as I went through much of

this with

> my husband Phil 18 months ago. That said let me tell you that the

symptoms do

> get better. I don't know what all the drugs are for but get a list

and keep a

> notebook of the use and side effect information from your pharmacist

to help

> keep it all straight.

>

> I think given all the problems I would opt out of the chemo pump

> FOR THE MOMENT. I would be looking at getting all infection,

swelling and

> dehydration under control.

>

> At that point I'd want a CT PET scan and maybe even an MRI to

reassess the

> liver and then if all looks doable full speed ahead!

> I wish you well

> God bless,

> Narice

>

> In a message dated 12/2/2004 4:05:25 PM Eastern Standard Time,

> irene@g... writes:

>

> > Subj: Re: Update on Rudy -- Enormous CEA

reading

> > down dramatically

> > Date: 12/2/2004 4:05:25 PM Eastern Standard Time

> > From: irene@g...

> > Reply-to: colon_cancer_support

> > To: colon_cancer_support

> > Sent from the Internet

> >

> > My brother is in pretty bad shape relatively speaking. Let me

> > explain. He was supposed to get resectioned, have a pump placed under

> > his skin that would deliver the chemo directly to the liver. He would

> > stay in the hospital for a week and start chemo the following week.

> > Nothing went according to plan.

> >

> > Once they went in they decided against the pump. (I still don't

> > understand the reason behind it.) He was then classified as stage IV.

> > He quickly developed loads of problems (clot in lungs, swelling that

> > made him go from 213lbs to 270lbs which limited his movement, and

> > inexplicable infections that required 2 drains in his abdominal area.

> > All this before he even had his first round of chemo! He ended

> > staying in the hospital for 8 weeks, and finally was able to come home

> > the week before thanksgiving. He does have abdominal pain, but I

> > believe that it is due to dry heaving and occasional vomiting. I

> > think that it due to the 17 different meds he was taking. He seems to

> > do OK when he has the chemo treatment. He is currently back in the

> > hospital due to dehydration and 'dangerously high' potassium levels.

> > So I don't know what to tell you about the abdominal pain at night

> > that your dad is experiencing. With all the other complications he's

> > having, it's hard to tell what would be caused by the chemo

> > treatments. Sorry I'm not of more help.

> >

> > -Irene

> >

>

December 3, 2004

I think I'm a little confused. They could not do a resectioning of

the liver. Like your husband, he has it in over 85% of the liver, and

a few lymph nodes. When they saw that, they decided against the pump,

and told us that the liver could not be resectioned. But that's what

I don't get; if the liver can regenerate, if they left 5% of it, would

it regenerate without the mets?

Thanks for answering Narice, best to you both!

Irene

> Glad to hear he is feeling better. Make sure that the resect can be

done

> safely.

> In my husband's case it can't due to multiple mets in all areas of the

> liver.

> This doesn't seem to be the case with your brother so I'd say keep

pushing.

>

> 'I'll be honest even though I pretty well knew the reason in the

back of my

> mind I wasn't willing to take no for an answer until the oncologist

and other

> Dr.s I trust told me the surgery would more than likely cause

spread. :-(

> Despite the fact the colon tumor is very large 13cm and there are mets

> ranging from 3-9cm Phil still feels good.

>

> So keep pushing unless they give you a darn good reason NOT to.

> Hang in there and God bless

> Narice

> " As long as I know the WHO

> I can bear any HOW

> even though I don't know WHY "

> (Commentary on Job from Dialogue in Despair)

>

December 5, 2004

Thanks Narice. I enjoyed reading your reply. I stopped crying a week

after he was diagnosed. A few days after he was diagnosed, a sense of

peace came over me. I just knew he would be ok. I wondered if what I

felt was false hopes, or me forcing myself to hope for the best, but I

truly believe it comes from within. I'm a recovering catholic *grin*,

and believe that religion in general is a very bad thing, but I do

believe in God and prayer in a very non-traditional sense. It does

help because my brother always feels good when others pray with him.

Now that he is out of the hospital after 8+ weeks, we can finally get

a second opinion. In a way, I am afraid of what I might hear, but

I'm more afraid of not knowing.

I'm happy that Phil has been feeling good. Doctors' opinions are just

that, opinions. We had one resident tell us that he wouldn't last a

month, maybe 3 with chemo. On the 22nd, he will have lived through

the 3 months, and right now he's doing well.

If it can happend to the bosox, it can happen to us!

Irene

> Hi!

>

> You'd have to ask the Dr. on that one. My husband's oncologist put

it this

> way to me:

> " It would be like the boy with his finger in the dike. You might

solve one

> problem but cause another. "

> With that much spread evidently there is a larger risk of spreading

the

> cancer just by opening him up.

>

> This part has been the hardest for me to accept. It is only natural

that we

> want to fix our loved ones and make this nightmare go away.

> I have still been blessed with at least a year more than anyone

thought we'd

> have together when Phil was 1st diagnosed. He feels relatively good

better in

> fact than some of those with stage 2 or 3!

>

> My advice is ask as many questions as you need to until you feel

comfortable

> that they really are doing everything they can.

> Then if your situation is as you say sit down and have a good cry

and resolve

> that it is not over until it's over. That God, not the Dr.s, or any

of us is

> in control and that you and your brother are going to spend however

much time

> you have fighting this darned disease and living life to its fullest.

> It won't be easy I know but you CAN do it.

> You simply put one foot in front of the other say lots of prayers

and live

> one day even one moment at a time.

>

> Then just for today CANCER DIDN'T WIN!!

> And as they say Miracles happen and WHY NOT US? ( Hey if the Red Sox

can win

> after 87 years why can't our loved ones be cured?! LOL)

>

> May God bless you

> Narice

>

December 5, 2004

If that's true then why don't they do it?

> > Glad to hear he is feeling better. Make sure that the resect can be

> done

> > safely.

> > In my husband's case it can't due to multiple mets in all areas

of the

> > liver.

> > This doesn't seem to be the case with your brother so I'd say keep

> pushing.

> >

> > 'I'll be honest even though I pretty well knew the reason in the

> back of my

> > mind I wasn't willing to take no for an answer until the oncologist

> and other

> > Dr.s I trust told me the surgery would more than likely cause

> spread. :-(

> > Despite the fact the colon tumor is very large 13cm and there

are mets

> > ranging from 3-9cm Phil still feels good.

> >

> > So keep pushing unless they give you a darn good reason NOT to.

> > Hang in there and God bless

> > Narice

> > " As long as I know the WHO

> > I can bear any HOW

> > even though I don't know WHY "

> > (Commentary on Job from Dialogue in Despair)

> >

December 6, 2004

Irene...

I keep saying the same thing to my husband, " If the Red Sox could

win, then anything can happen! " We are originally from Boston and

he is so worried about me. I think he is having a harder time with

my diagnosis than I am.

He had colon surgery a few years ago for a ruptured colon, and has a

good idea of what I am in for on Thursday. His fear for me is so

evident. He's not someone who usually shows emotion, but this has

been tough for him.

And, I like Narice's mantra: Just for today the cancer won't win.

Like you, I am new to colon cancer, and learning as I go along. But

I have a lot of 'medical' experience and am using all of it to get

me through this.

I am the consumer, and the doctor and hospital work for me. Tell

them up front what you expect, in my case, I want to know

everything, will not tolerate being patronized, and expect that only

competent people will be treating me.

I ask, if I were your wife, mother, sister, daughter what would you

advise?

Where are you going that you couldn't get a second opinion. I

remember when my alziehmer's mother-in-law got an opinion to have a

radical mastectomy for a lump, from a doctor in Plymouth. I went

home, called Dana Farber, and had an appointment in three days. She

saw the Chief of Oncology for Harvard Medical School, and set her up

to remove just the lump and put her on tomoxofin (sp).

I am having surgery on Thursday, with the doctor from my second

opinion. I didn't like that the first didn't want a cat-scan and

canceled the surgery that I was supposed to have a month ago. " We

don't scan for every ache and pain " was his reasoning. And I didn't

like the atmosphere in the clinic...way too much fear, and gloom and

doom. I just got a bad feeling, and took it as my father wispering

in my ear to run.

Wake Forest/Baptist Comprehensive Cancer Center, where I am

receiving care now is so different. They would operate without the

cat-scan (it showed no spread of the disease). Everyone is helpful,

hopeful, and I just get a sense of being in good hands there.

I wish you well, and hope for an optimistic second opinion. I was

so impressed with Dana Farber and how well they treated my mother in

law.

Watching the pigs fly by with Red Sox caps on,

Ann Flaherty

Comfort! Create! Unite!

Operation Kid Comfort

http://www.asymca.org/operation_kid_comfort.htm

June 25, 2008

All I can say is WOW!!!!GUY

>

> Irene, MCS is chemical Intolerance. A slow poisoning of your

organs. Your immune system becomes so damaged it stops eliminating

toxins. There is about 15 % of the population that has it and the

numbers are growing. About 6% is severe, I am in the 6%. Your body

losses it's ability to eliminate toxins which are in just about

everything. The Hospitals are not prepared for any patient with this

condition. I know of 1 in NM has 2 rooms. Reason why I now have

letters explaining my condition which I introduce to the hospitals in

advance to advise them of my condition and for them to put me in

contact with someone at their facility who would work with me on

coordinating care. What happened to me was the doctors do not know

of it, I was just diagnosed so I was short on education catching up

is at least 1 year. The information for this is extensive more than

most, and not diminishing any one medical condition by any means,

there is no aspect of your life

> it does not affect. I had just been diagnosed. I did not know of

all the blocks in the middle of the road. I had a guideline and it

was not enough for me, because of their refusal to follow things, it

was hard, keep reading and you will see. I was not at the level of

knowledge yet, been when it happened it was just too recent after

diagnosis.

>

> I react to ..0001% of something. It could be anything. Medication,

the air (full of VOC's) , cleaners, sheets, syringes, plastic, soap,

shampoo, cream, lotion , food, additives, preservatives, paint, mold,

fumes of any kind, perfume, hair spray, gel, toothpaste, clothing,

copiers, print material, the list goes on. The hospitals are full of

all of these. They are not going to remove them for any of us.

Isolation rooms are the best because they are hypoallergenic, usually

with silk sheets, (I do not tolerate polyester) (or cotton grown with

or treated with chemicals) it has it own air return so I do not share

the air with others. In addition I can clean that space more with one

of my special air filtering machines, none of which I had at the

time.

>

> The reason why I did not go back to the pulmonologist was that he

changed his mind after he was going to do a biopsy, 2. he wanted me

to go blow threw plastic which I cannot do after knowing what I had.

The medical equipment is just not here for us. A hospital must order

some equipment in advance, reason for the letter. It is ordered from

a special place in a package. And I must have an emergency kit

available myself (which I also did not have since just being

diagnosed and still don't have) however my Physician had something

he had my Doctor who he never spoke to. A person who could

have guided him , for what to give me, what not to give me. He never

spoke to him. I tried so many times to talk to the Surgeon he would

not come, hence the perfume in the OR. Plus I changed his disclosure

form he would not sign it afterward.

>

> The hospital had no food for me, no needles, no glass bottles, or

glasses, not a shower filter , they did not even have my regular

medicine. I had to bring it from home. My fiancee brought me food

when I was allowed to eat. I can only eat organic, so I do not react

to dyes, preservatives, chemicals, which are in all foods, like MSG,

Phosphates, nitrates, sodium, the hospital would try to give me jello

which has yellow # , red # , artificial colorants, things like that.

>

> I kept a great deal of things away from me while conscious, while I

could make the nurse bring it or get it out of my room in most cases.

My respiratory nurse (they were treating my lungs I did not have ILD

yet, they were clear) came with perfume from detergent, I sent her

away, as I did the surgeon after I was in OR. I went home. Forget

this. It is a job for me to be there amongst all these people who

would just not listen, whom I also could not control, how can I tell

you to come to the hospital scentless, wth no chemicals, or VOC'S .

>

> I did not let the cleaners in the room, however they are cleaning

the room next door. Those are VOC's in my air space and all I need

is .0001% to react or store in my organs because that is what my body

does. It stores what it eats, breathes and is applied to my skin or

absorbed threw it that is a VOC or chemical, or that sort of thing.

>

> What I need in a hospital is a " Clean Room " , that is what it is

called. Then a lot of listening and consulting. A lot of

understanding because some of it we guess. With caution a lot of

caution.

>

> I hope this helps. The only Hospital I know that has a protocol for

us is Mercy Hospital in Iowa. Which they share with all of us. It

involves entire hospital from, pharmacy, food, cleaning, supplies,

environmental and so on. I know how much human contact means in a

hospital setting however I cannot.

>

> You are absolutely right, we should be vocal and not allow

ourselves to be abused or mistreated. I really jump on them now. All

I needed was that one time in the hospital to be even bolder. I was

as vocal as I could be actually there. Sometimes they lie to you

however I can notice it immediately as soon as my body says OH

NO !!!!

> XXXOOOXXXX Thank you for your support it means a lot to me and

you kind words about your experiences all is really

appreciated !!!!!!!!!

> God Bless !!

> dragonflymcs

> Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

> < Click on me !!

>

> Mayleen

>

> Mayleen, what is MCS?

>

> A few suggestions and my own personal experience. In my recent

admission to hospital, I've met a few patients

> and they had invited me to their room several times, so I won't be

in my room all by myself with the tv on lol!

>

> So one day I took them up on their offer and I visited them. One of

them let me sit on their bed because I was about

> to fall on the floor. I had a pole with 3 pumping machines and

about 4 IV lines running through it. We chatted for a long

> time and we discussed our medical problems and we exchanged ideas

on how to deal with an NG tube in the nose for

> the next 2 weeks, the fluids that they were suctioning from our

stomach's... .chatted about life in general, we got to

> laugh and use our sense of humours.

>

> What I'm trying to say, as I was telling my story and how I ended

up in the hospital, one of the patient told me " I will

> never complain again in my life, Irene you've been worse than me

and I'm here complaining for nothing. I told him,

> you have every right to complain about and vent.....

>

> Honestly Mayleen, I cannot imagine what you're going through...I

Hope soon you'll find the right dr's and receive the

> best medical attention you deserve. One thing I also learned in my

experience, is research about my illnesses and learn

> everything possible. I have found what works and doesn't work in

medications, etc....

>

> In my experience, I have learned to speak up my mind and if

something is going wrong with my treatment, I will

> definitely say something. I carry a medic alert bracelet, a printed

copy of all my allergies, medications, illnesses

> and surgeries.

>

> I can tell you also, that I have gotten in a lot arguments with

dr's over the years for the poor treatment etc, I was

> receiving. Mayleen you need to stand up and tell the dr's that

you're in need of serious medical attention. You have

> to keep fighting for yourself and for your health. Over the years

I've learned to talk medical terminology or in there

> medical language with my dr's....

>

> When and if I present myself to emergency room they make a copy of

the list and they follow protocol until I'm

> discharged.

>

> This year, I contacted Patient's Advocate department 3 times about

the treatment (within 3 weeks apart) I received in ER...

> can you do the same for the hospital you received the treatment.

>

> I'm only asking because their might be other patients in the same

situation as you, that are getting the same rude, attitude

> treatment etc...from the medical professionals.

>

> Over the years, I have changed so many dr's because they weren't

willing to help at all. Right now my dr's are fine.

>

> Are there any foundations that deal with the illnesses you have?

> Can you change hospitals, to a hospital that specialize with what

you have?

> Can you find specialists in your area, or if you can travel to

another hospital in your area...that have dr's that specialize in MCS

> write them a letter about your health, explaining what you're going

through on a daily basis, meds, treatments you have tried, and

> how it's affecting you....

>

> A few years ago, I did write a letter to a dr...and I can tell you

his still my dr! Mayleen once you find the right dr's, you'll see it

will

> make a big difference.

>

> A few years ago, over here in the newspaper... .there was a story

in need of a family dr

> A patient had a hard time getting an appointment or they were not

accepting

> new patients.... she decided to run an add in the newspaper about

her needing help and medical attention, that soon

> after the ad was run...there were so many calls she received from

the local dr's willing to help.

>

> Hugs

> Irene

>

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June 25, 2008