Re: Your leukemia story..

[Guest guest]

Welcome to the group Alison. May I suggest that you tell us a little

bit about yourself. We're always happy to welcome new members to our

group. I think some of us might be put off just a bit however, by

someone who joins the group and right away asks us to open up our

deepest darkest fears, exposing our vulnerabilites to someone we know

absolutely nothing about. Perhaps if you shared some of your feelings

and how you're dealing with leukemia, others will be more comfortable

sharing their feelings.

Tracey

dx Jan 2002

>

> I'm curious about what other leukemia patients have gone through

with their treatments

> and ongoing process with their leukemia.

>

> Please write back as soon as you can, thank you!

>

> 1. When hearing your diagnosis, what was one of your biggest

fears?

> 2. What did you do to deal with this fear?

> 3. At this point, where is that fear in your life now?

>

> Thanks,

> Alison

>

[Guest guest]

Alison,

After experiencing some side pain the week of Thanksgiving, I went

to the hospital to have it checked out. The first doctor that saw

me (I was in an emergency room cubicle) thought I might have a

hernia. I got an x-ray and then a blood test.

In a couple of hours, and while sitting on a bed in the same

emergency room cubicle, an oncologist walked in and stood on the

other side of the room. He said I had an enlarged spleen and that

my white blood cell count was quite high (330). He then said that I

have leukemia. He said a few more words before I told him I was

feeling nautious and that I might be sick. I then fainted, falling

forward onto the hard tile floor. The fall left me with a huge gash

over my right eye, an equally bloody nose, a severely chipped front

tooth, and searing pain in my neck (I also lost my bladder).

I was picked up off the floor by one or two attendants. I was

cleaned-up a bit and sutured, before being shipped off by ambulance

to another hospital where doctors began treating my CML (hydrea

pills have lowered my white blood cell count to normal now).

Anyway, I must say that I was appalled at how the leukemia diagnosis

was presented to me. Precautions could have been taken in the event

I did not react well to news of my condition, particularly since the

first doctor that saw me that morning said I might only have a

hernia. The oncologist could have stood by my side. Instead, he

stood on the other side of the room. My wife, who was in the

emergency room lobby, could have been called into the room and stood

next to me. A nurse could have been called into the room. None of

these or other possible precautions were taken.

Instead of focusing on my CML the first two nights in the hospital,

I was preoccupied with my neck (had to take a lot of pain

medication), my shattered front tooth and my swollen right eye.

I have since contacted the hospital in question with one key hope:

That what happened to me will never happen to another. I am awaiting

the hospital's response.

Wayne

[Guest guest]

Wow!!! What a story and what lousy tact on the part of the onc.

I didn't fall down when I was first dx'ed, but it was shocking. I was

dx'ed in a walk-in clinic after getting checked for some swollen

ankles that I noticed. I was worried that there might be something

wrong with my liver because the week before was spent drinking pretty

heavily a few nights in a row on a business trip.

The initial dx was that I likely had leukemia. That was obviously

pretty heavy. I was told not to worry though because it could be the

machine was faulty. So the next morning I went to a lab to have a

CBC. The results of that CBC were given to me by the head doc at the

walk-in clinic. Without hesitation, she said I have AML and that I

needed to go home, pack my things, and wait for a phone call. They

were going to get a room for me at a cancer treatment

center " hopefully " that night. I was told to make plans to be there

for 4 MONTHS!!!

My fiance and I had a wedding set for the end of that month. Figuring

I would be in quarantine and heaven forbid, not make it through the

procedure, we found a notary where I work and got married on the

spot. Just us, our baby, the notary and 2 witnesses. I also made sure

my life insurance paperwork was up to date. Talk about 1 stop

shopping. I can joke about it now, but the day really was horrible.

After waiting through the night and most of the next day, that phone

call never came. I finally had to track the doctor down to find out

whas was going on. Turns out a real oncologist emerged and she felt

that I had CML and not AML. With a few days of non stop studying on

the various types of leukemia, this was great news.

Today I feel great. Actually I felt great the day we were SUPPOSED to

get married. Of course my poor wife missed out on a very special

wedding day thanks to that doctor. At least the doc said to bring my

wife with to break the news.

My blog site details the whole hellish ordeal if anyone wants to

check it out...

http://strengthtoday.blogspot.com

--- In , " tinman1939new " <tinman1939new@...>

wrote:

>

> Alison,

>

> After experiencing some side pain the week of Thanksgiving, I went

> to the hospital to have it checked out. The first doctor that saw

> me (I was in an emergency room cubicle) thought I might have a

> hernia. I got an x-ray and then a blood test.

>

> In a couple of hours, and while sitting on a bed in the same

> emergency room cubicle, an oncologist walked in and stood on the

> other side of the room. He said I had an enlarged spleen and that

> my white blood cell count was quite high (330). He then said that I

> have leukemia. He said a few more words before I told him I was

> feeling nautious and that I might be sick. I then fainted, falling

> forward onto the hard tile floor. The fall left me with a huge

gash

> over my right eye, an equally bloody nose, a severely chipped front

> tooth, and searing pain in my neck (I also lost my bladder).

>

> I was picked up off the floor by one or two attendants. I was

> cleaned-up a bit and sutured, before being shipped off by ambulance

> to another hospital where doctors began treating my CML (hydrea

> pills have lowered my white blood cell count to normal now).

>

> Anyway, I must say that I was appalled at how the leukemia

diagnosis

> was presented to me. Precautions could have been taken in the

event

> I did not react well to news of my condition, particularly since

the

> first doctor that saw me that morning said I might only have a

> hernia. The oncologist could have stood by my side. Instead, he

> stood on the other side of the room. My wife, who was in the

> emergency room lobby, could have been called into the room and

stood

> next to me. A nurse could have been called into the room. None of

> these or other possible precautions were taken.

>

> Instead of focusing on my CML the first two nights in the hospital,

> I was preoccupied with my neck (had to take a lot of pain

> medication), my shattered front tooth and my swollen right eye.

>

> I have since contacted the hospital in question with one key hope:

> That what happened to me will never happen to another. I am

awaiting

> the hospital's response.

>

> Wayne

>

[Guest guest]

After reading your story, I have to relay a similar, but not as painful

story as yours. I had quit smoking and was drinking 6-8 bottles of water a

day. However, instead of losing weight, I started gaining. I went to my

doctor and ask for a blood test to see if I had diabetes or thyroid

problems. When I called about my blood work, the nurse says they had to do

some more tests. A few days later I called and the nurse says, the doctor's

gone but the report is on his desk with a note for you to call a

hematologist. I call the doctor the next morning and " OVER THE PHONE " , he

says " your white count is too high and I've had additional test run. You

need to see a hematologist/oncologist, you have leukemia " . Well, I'm

sitting on the phone and felt like someone had kicked me in the stomach.

When I gained my composure, I ask " you mean like a cancer doctor " . His

comment was " yes " . I was to the point of tears and immediately ended the

conversation and spent the next 5 minutes or so hysterically crying. We

have a lot of cancer in my family, but no leukemia. I then contacted my

family and told them the news. Of course, it was 2 weeks before I could get

to the cancer center for a bone marrow and confirmation.

Do these doctors not hear themselves or realize the trauma of receiving news

that you have cancer? I am still in shock from that one and that doctor has

never contacted me for a follow up or to see why I never returned.

Barb from GA

_____

From: [mailto: ] On Behalf Of

tinman1939new

Sent: Thursday, December 21, 2006 1:43 PM

Subject: [ ] Re: Your leukemia story..

Alison,

After experiencing some side pain the week of Thanksgiving, I went

to the hospital to have it checked out. The first doctor that saw

me (I was in an emergency room cubicle) thought I might have a

hernia. I got an x-ray and then a blood test.

In a couple of hours, and while sitting on a bed in the same

emergency room cubicle, an oncologist walked in and stood on the

other side of the room. He said I had an enlarged spleen and that

my white blood cell count was quite high (330). He then said that I

have leukemia. He said a few more words before I told him I was

feeling nautious and that I might be sick. I then fainted, falling

forward onto the hard tile floor. The fall left me with a huge gash

over my right eye, an equally bloody nose, a severely chipped front

tooth, and searing pain in my neck (I also lost my bladder).

I was picked up off the floor by one or two attendants. I was

cleaned-up a bit and sutured, before being shipped off by ambulance

to another hospital where doctors began treating my CML (hydrea

pills have lowered my white blood cell count to normal now).

Anyway, I must say that I was appalled at how the leukemia diagnosis

was presented to me. Precautions could have been taken in the event

I did not react well to news of my condition, particularly since the

first doctor that saw me that morning said I might only have a

hernia. The oncologist could have stood by my side. Instead, he

stood on the other side of the room. My wife, who was in the

emergency room lobby, could have been called into the room and stood

next to me. A nurse could have been called into the room. None of

these or other possible precautions were taken.

Instead of focusing on my CML the first two nights in the hospital,

I was preoccupied with my neck (had to take a lot of pain

medication), my shattered front tooth and my swollen right eye.

I have since contacted the hospital in question with one key hope:

That what happened to me will never happen to another. I am awaiting

the hospital's response.

Wayne