Re: Participation and feeling guilty.

January 7, 2007

Jmace:

I know what you are saying, you don't have to battle like those with breast

cancer or those going through chemotherapy and the like. You are correct, we

don't have short term battles, but we do indeed have long term ones. We are

battling for quality of life, for longevity and for acceptance in our new

circumstances. There is nothing to feel guilty about.

Sometimes I used to feel jealous. I know of many people cured of cancer

that fought through chemotherapy or operations and are now healed. Now that is

a battle I could get up for. You fight, you win or lose, and then your life

returns to normal. But you know what, I don't think that their lives are

normal either. They have to worry about the cancer returning, about their

immune system and about being accepted as a " survivor " , just like we do. I got

over my jealousy when I understood that about everyone with cancer. We all

fight battles, both physical and mental, but the battles are all different.

You know, when I was first diagnosed, I thought that I would have to quit my

job and concentrate on beating CML. So I thought I would take a light

hearted look and find jokes about Leukemia. The only jokes I found had the

punch

line " Well at least I don't have Leukemia " . So much for humor. I did make

one up, but it is fairly awful.

Also I am the sole wage earner in my family and my job is very demanding.

In fact, my employer was going through hard times and cut everyones pay who

stayed and laid others off. Since I needed health insurance, I had to stay.

So I " battled " to make additional money, while I was getting used to 800 mg

of Gleevec per day. I have been able to start a small business of my own, but

I still work for the same employer and fear leaving them completely because

of my lack of health insurance. I am just starting to make the salary from

both jobs that I did when I was diagnosed. However, I feel the pressure daily

and I really cannot allow myself the chance to think about what may happen

if CML revisits me in full force again.

We do have our battles and struggles. Don't feel guilty in the least. Our

battle is just different from others.

With regards,

Matt

Dx 01/05

Gleevec since 03/05

Father of 3

In a message dated 1/7/2007 3:32:40 P.M. Eastern Standard Time,

jmace2000@... writes:

Since being dx'ed in July, I have felt physically great and

increasingly great emotionally as I've come to accept CML and that

life can carry on normally thanks to Gleevec. I am thankful for this

every moment.

When I was dx'ed, my life was turned upside down. As we all know, you

go through so many stages of emotions and your life really changes. I

became very aware of my own mortality and what is really important. I

became very aware of the various cancer organizations like Relay For

Life and Team In Training and felt compelled and obligated to

participate.

I had never before been one to rally behind a cause and there I was

attending the meetings and supporting the initiatives. I was and

still am blown away by how caring people can be and how generous some

people are with their time and efforts. But as I become more and more

involved I feel like I'm doing it more for other people than for

myself. I'm feeling obligated (and urged) to be the new poster boy

for CML.

The truth is, I feel the best emotionally and physically when I

forget that I have CML (truly a blessing). Being a part of Relay or

other cancer groups constantly reminds me that I have cancer and that

I could die. People are dying every day from this stuff and it breaks

my heart to dwell on that, to read the blogs, and constantly

acknowledge death.

In Relay For Life, I'm called a " Survivor " . I don't feel like a

survivor because I haven't gone to battle. I feel unworthy of the

membership and guilty that I just want to live a life that isn't

focused on cancer. Personally, I feel that carrying on with life,

staying positive, eating right, and not dwelling on cancer is the

best approach for me but it does nothing for the movement.

Has anyone battled with this guilt?

January 8, 2007

At 08:25 PM 1/7/07 +0000, you wrote:

>In Relay For Life, I'm called a " Survivor " . I don't feel like a

>survivor because I haven't gone to battle. I feel unworthy of the

>membership and guilty that I just want to live a life that isn't

>focused on cancer. Personally, I feel that carrying on with life,

>staying positive, eating right, and not dwelling on cancer is the

>best approach for me but it does nothing for the movement.

Dear ??

You are early in this journey (being dx in July)........

I have heard that the day after you are dx with cancer, you are a survivor!

every day you are a survivor. Despite anything or any obstacle that CML

puts in your path, you carry on, living life with cancer. That does not

mean that it has to be the focus of your life....and we all go through

phases, when we need to just escape it and that may be where you are right

now. Lots to people take 'breaks' from the lists, etc. You will have CML

for many years to come.......if you feel like it, you can contribute to the

cause later. Right now maybe it is better to focus on your own needs and

what you want to do in the future (with new insights and maybe some

modifications to old plans). So, I would say....don't feel guilty......go

live your best life. Check in with the list when you feel like it.....and

when you have stuff to share.

an old timer,

C. (dx 8.5 years ago)

January 8, 2007

Good morning,

I remember being at a Leukemia & Lymphoma Society event (Light the

Night) soon after diagnosis where they were giving out t-shirts to

survivors and I didn't think that I should take one. I thought the

shirts were for those who had undergone a stem cell transplant and

come out of it cured. I was surprised to find out that the LLS

definition of survivor is anyone diagnosed with cancer -- that is,

you are a survivor a minute after diagnosis.

I was also saddened and scared by the number of people walking in

memory of someone who had passed away. It rattled me to the point

that I couldn't finish the walk.

The next year I took a t-shirt. And it empowers me to think of

myself as a survivor.

We all walk this new post-diagnosis life differently. My first year

was tough for me. I didn't tell many people about my diagnosis.

I'm more open now as I approach my 4 year anniversary. And I'm more

comfortable at LLS events and volunteering -- but it's taken a while

to reach this point.

I don't read these boards each day and I don't post too often, and

that's OK for me.

Do what is comfortable for you. Enjoy your life. You deserve to

approach this new life with CML in whatever way feels right to you.

Best wishes,

Kathy

dx 5/03

>

> Since being dx'ed in July, I have felt physically great and

> increasingly great emotionally as I've come to accept CML and that

> life can carry on normally thanks to Gleevec. I am thankful for

this

> every moment.

>

> When I was dx'ed, my life was turned upside down. As we all know,

you

> go through so many stages of emotions and your life really changes.

I

> became very aware of my own mortality and what is really important.

I

> became very aware of the various cancer organizations like Relay

For

> Life and Team In Training and felt compelled and obligated to

> participate.

>

> I had never before been one to rally behind a cause and there I was

> attending the meetings and supporting the initiatives. I was and

> still am blown away by how caring people can be and how generous

some

> people are with their time and efforts. But as I become more and

more

> involved I feel like I'm doing it more for other people than for

> myself. I'm feeling obligated (and urged) to be the new poster boy

> for CML.

>

> The truth is, I feel the best emotionally and physically when I

> forget that I have CML (truly a blessing). Being a part of Relay or

> other cancer groups constantly reminds me that I have cancer and

that

> I could die. People are dying every day from this stuff and it

breaks

> my heart to dwell on that, to read the blogs, and constantly

> acknowledge death.

>

> In Relay For Life, I'm called a " Survivor " . I don't feel like a

> survivor because I haven't gone to battle. I feel unworthy of the

> membership and guilty that I just want to live a life that isn't

> focused on cancer. Personally, I feel that carrying on with life,

> staying positive, eating right, and not dwelling on cancer is the

> best approach for me but it does nothing for the movement.

>

> Has anyone battled with this guilt?

>

January 8, 2007

Amen brother! Thanks for your reply.

>

> Jmace:

>

> I know what you are saying, you don't have to battle like those

with breast

> cancer or those going through chemotherapy and the like. You are

correct, we

> don't have short term battles, but we do indeed have long term

ones. We are

> battling for quality of life, for longevity and for acceptance in

our new

> circumstances. There is nothing to feel guilty about.

>

> Sometimes I used to feel jealous. I know of many people cured of

cancer

> that fought through chemotherapy or operations and are now

healed. Now that is

> a battle I could get up for. You fight, you win or lose, and then

your life

> returns to normal. But you know what, I don't think that their

lives are

> normal either. They have to worry about the cancer returning,

about their

> immune system and about being accepted as a " survivor " , just like

we do. I got

> over my jealousy when I understood that about everyone with

cancer. We all

> fight battles, both physical and mental, but the battles are all

different.

>

> You know, when I was first diagnosed, I thought that I would have

to quit my

> job and concentrate on beating CML. So I thought I would take a

light

> hearted look and find jokes about Leukemia. The only jokes I found

had the punch

> line " Well at least I don't have Leukemia " . So much for humor. I

did make

> one up, but it is fairly awful.

>

> Also I am the sole wage earner in my family and my job is very

demanding.

> In fact, my employer was going through hard times and cut

everyones pay who

> stayed and laid others off. Since I needed health insurance, I

had to stay.

> So I " battled " to make additional money, while I was getting used

to 800 mg

> of Gleevec per day. I have been able to start a small business of

my own, but

> I still work for the same employer and fear leaving them

completely because

> of my lack of health insurance. I am just starting to make the

salary from

> both jobs that I did when I was diagnosed. However, I feel the

pressure daily

> and I really cannot allow myself the chance to think about what

may happen

> if CML revisits me in full force again.

>

> We do have our battles and struggles. Don't feel guilty in the

least. Our

> battle is just different from others.

>

> With regards,

>

> Matt

> Dx 01/05

> Gleevec since 03/05

> Father of 3

>

> In a message dated 1/7/2007 3:32:40 P.M. Eastern Standard Time,

> jmace2000@... writes:

>

> Since being dx'ed in July, I have felt physically great and

> increasingly great emotionally as I've come to accept CML and that

> life can carry on normally thanks to Gleevec. I am thankful for

this

> every moment.

>

> When I was dx'ed, my life was turned upside down. As we all know,

you

> go through so many stages of emotions and your life really

changes. I

> became very aware of my own mortality and what is really

important. I

> became very aware of the various cancer organizations like Relay

For

> Life and Team In Training and felt compelled and obligated to

> participate.

>

> I had never before been one to rally behind a cause and there I

was

> attending the meetings and supporting the initiatives. I was and

> still am blown away by how caring people can be and how generous

some

> people are with their time and efforts. But as I become more and

more

> involved I feel like I'm doing it more for other people than for

> myself. I'm feeling obligated (and urged) to be the new poster boy

> for CML.

>

> The truth is, I feel the best emotionally and physically when I

> forget that I have CML (truly a blessing). Being a part of Relay

or

> other cancer groups constantly reminds me that I have cancer and

that

> I could die. People are dying every day from this stuff and it

breaks

> my heart to dwell on that, to read the blogs, and constantly

> acknowledge death.

>

> In Relay For Life, I'm called a " Survivor " . I don't feel like a

> survivor because I haven't gone to battle. I feel unworthy of the

> membership and guilty that I just want to live a life that isn't

> focused on cancer. Personally, I feel that carrying on with life,

> staying positive, eating right, and not dwelling on cancer is the

> best approach for me but it does nothing for the movement.

>

> Has anyone battled with this guilt?

>

January 9, 2007

Thanks to you all for your feedback on this and kind comments.

>

> Since being dx'ed in July, I have felt physically great and

> increasingly great emotionally as I've come to accept CML and that

> life can carry on normally thanks to Gleevec. I am thankful for

this

> every moment.

>

> When I was dx'ed, my life was turned upside down. As we all know,

you

> go through so many stages of emotions and your life really changes.

I

> became very aware of my own mortality and what is really important.

I

> became very aware of the various cancer organizations like Relay

For

> Life and Team In Training and felt compelled and obligated to

> participate.

>

> I had never before been one to rally behind a cause and there I was

> attending the meetings and supporting the initiatives. I was and

> still am blown away by how caring people can be and how generous

some

> people are with their time and efforts. But as I become more and

more

> involved I feel like I'm doing it more for other people than for

> myself. I'm feeling obligated (and urged) to be the new poster boy

> for CML.

>

> The truth is, I feel the best emotionally and physically when I

> forget that I have CML (truly a blessing). Being a part of Relay or

> other cancer groups constantly reminds me that I have cancer and

that

> I could die. People are dying every day from this stuff and it

breaks

> my heart to dwell on that, to read the blogs, and constantly

> acknowledge death.

>

> In Relay For Life, I'm called a " Survivor " . I don't feel like a

> survivor because I haven't gone to battle. I feel unworthy of the

> membership and guilty that I just want to live a life that isn't

> focused on cancer. Personally, I feel that carrying on with life,

> staying positive, eating right, and not dwelling on cancer is the

> best approach for me but it does nothing for the movement.

>

> Has anyone battled with this guilt?

>

January 10, 2007

:

I think you should go back into law and fight for the insurance rights for

everyone on Gleevec, Sprycel and Interferon. Heck, because of the medication,

we all have that cognitive issue, so we would forget what you had and had

not done. You would never have to worry about your malpractice insurance.

By the way, I took a Gleevec Holiday (against the wishes of MD but

with full approval of my local oncologist) and felt great over the holidays.

No nausea, no diarrhea, no bone pain, no muscle cramps. It is good to know

that if you cease the medication, the side effects disappear in a short

period of time. Just started back on 400 mg today.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

_mtmaynor@..._ (mailto:mtmaynor@...)

In a message dated 1/10/2007 1:15:14 P.M. Eastern Standard Time,

deh12@... writes:

Hi, Donna.

I can relate to what you're saying (and I appreciate your poem). I,

too, stopped working and went on disability last April. I was a

lawyer in my former life and, like full-time nursing, the job was

just too much for me, especially since my side effects include

cognitive deficits like memory loss and impaired focus and

concentration -- the minimum requirements for being a lawyer. I was

constantly in fear of committing malpractice, getting fired and

leaving me uninsured and unemployable.

I'm still on my firm's medical plan, but that will end when they

eventually terminate my employment (which will probably happen this

spring if I can't return to work). At that point, like you I'll

have COBRA available for 18 months.

The interesting thing that my firm's benefits coordinator told me is

that, after COBRA runs out, I can " convert " it to a private policy

with the insurance company (which happens to be Oxford Health

Plans). You might consider looking into this with your former

employer's benefits person or with the insurance company you have

through COBRA. I don't know if that's unique to my firm's plan or

if it's universally available.

Of course it's more expensive than an employer-provided plan, but I

don't think and insurer can turn you down for pre-existing

conditions as long as you don't let coverage lapse for a certain

amount of time. (Here's where my knowledge of the rules gets rather

shaky -- you should definitely speak with someone knowledgeable

about the rules.)

Best of luck to you.

Warm regards.

January 10, 2007

Hi all, my name is Donna, I was dx in nov.05 and started on hydroxyurea and

allunpurinal for awhile, now on 300mg of G, I can't work full time anymore, I am

a pediactric nurse and the job is just too demanding, I've been doing some

homecare jobs and seems to be better. I pay my cobra insurance right now and am

not sure what to do when that runs out. Anyway, when I was first dx I started

writing some poems. This is one from early on, I to feel guilty sometimes, seems

like friends and family are concerned at first and then they kinda forget about

you because you're going on with your life, of course I'm grateful for this,

just hard to deal with.

Good Cancer?

I guess if you don't look sick

not lying in bed

Some people poo poo you

say " it's all in your head "

I had someone say " you don't really have cancer,

well not the BAD kind "

Myabe she wants some

is she out of her mind

As I retch in the bathroom, and lose yet another meal

I pray no one else has to feel what I feel

Well my hair is cut short

and I have lost some fat

So it must be the good kind

of cancer at that

People say that I'm looking better

than I have in years

Well now that makes my day

and calms all my fears

I've met lots of new people

drs, nurses and such

Even went to a meeting

but didn't care for it much

Maybe tomorrow I won't feel so doomy

and maybe my next writing won't be so gloomy

by, Donna Marie CML survivor!

mtmaynor@... wrote: