Re: Frustrated - No answers

[Guest guest]

Donna-I am so sorry to hear that Rick is having such a rough time.

Since Rick hasn't been on chemotherapy for a while, did his

oncologist have an explanation for why his platlet count is low? I

don't think radiation makes them change much.

My thoughts and prayers are with you both. I hope things turn around

shortly.

Kris

[Guest guest]

Donna-I am so sorry to hear that Rick is having such a rough time.

Since Rick hasn't been on chemotherapy for a while, did his

oncologist have an explanation for why his platlet count is low? I

don't think radiation makes them change much.

My thoughts and prayers are with you both. I hope things turn around

shortly.

Kris

[Guest guest]

Actually, the nurse for the " on call " Onc (ours is out until

Tuesday, of course) said that the radiation can cause the same kind

of drops that chemo does. However, .......... I know this nurse a

little bit personally, ............ not sure I'd bet alot on her

opinion. Seems they'd be concerned over the blood-tinged

urine .......but they are just really " vague " all of a sudden. I'm

making some calls and pulling some favors in to find out what's

going on ........... if he's not better by Monday, me and my

notarized POA will be securing an appointment with the Docs to get

to the bottom of it. I will not stand by and watch him feel this

bad without them even attempting to make him comfortable. Ooh .....

it just really burns me up .......they act like he's just got a

little cold! The odd part is that they have always been pretty good

at being concerned when something isn't right and jumping right on

it ............... that's why this is so confusing to me. It's

almost as if they just don't want to talk about ........ makes no

sense. Guess we'll see! Thanks for your support and

input, ....I'll check further into that.

" Steamed " but still holding strong!

Donna

> Donna-I am so sorry to hear that Rick is having such a rough time.

> Since Rick hasn't been on chemotherapy for a while, did his

> oncologist have an explanation for why his platlet count is low? I

> don't think radiation makes them change much.

>

> My thoughts and prayers are with you both. I hope things turn

around

> shortly.

>

> Kris

[Guest guest]

Actually, the nurse for the " on call " Onc (ours is out until

Tuesday, of course) said that the radiation can cause the same kind

of drops that chemo does. However, .......... I know this nurse a

little bit personally, ............ not sure I'd bet alot on her

opinion. Seems they'd be concerned over the blood-tinged

urine .......but they are just really " vague " all of a sudden. I'm

making some calls and pulling some favors in to find out what's

going on ........... if he's not better by Monday, me and my

notarized POA will be securing an appointment with the Docs to get

to the bottom of it. I will not stand by and watch him feel this

bad without them even attempting to make him comfortable. Ooh .....

it just really burns me up .......they act like he's just got a

little cold! The odd part is that they have always been pretty good

at being concerned when something isn't right and jumping right on

it ............... that's why this is so confusing to me. It's

almost as if they just don't want to talk about ........ makes no

sense. Guess we'll see! Thanks for your support and

input, ....I'll check further into that.

" Steamed " but still holding strong!

Donna

> Donna-I am so sorry to hear that Rick is having such a rough time.

> Since Rick hasn't been on chemotherapy for a while, did his

> oncologist have an explanation for why his platlet count is low? I

> don't think radiation makes them change much.

>

> My thoughts and prayers are with you both. I hope things turn

around

> shortly.

>

> Kris

[Guest guest]

Actually, the nurse for the " on call " Onc (ours is out until

Tuesday, of course) said that the radiation can cause the same kind

of drops that chemo does. However, .......... I know this nurse a

little bit personally, ............ not sure I'd bet alot on her

opinion. Seems they'd be concerned over the blood-tinged

urine .......but they are just really " vague " all of a sudden. I'm

making some calls and pulling some favors in to find out what's

going on ........... if he's not better by Monday, me and my

notarized POA will be securing an appointment with the Docs to get

to the bottom of it. I will not stand by and watch him feel this

bad without them even attempting to make him comfortable. Ooh .....

it just really burns me up .......they act like he's just got a

little cold! The odd part is that they have always been pretty good

at being concerned when something isn't right and jumping right on

it ............... that's why this is so confusing to me. It's

almost as if they just don't want to talk about ........ makes no

sense. Guess we'll see! Thanks for your support and

input, ....I'll check further into that.

" Steamed " but still holding strong!

Donna

> Donna-I am so sorry to hear that Rick is having such a rough time.

> Since Rick hasn't been on chemotherapy for a while, did his

> oncologist have an explanation for why his platlet count is low? I

> don't think radiation makes them change much.

>

> My thoughts and prayers are with you both. I hope things turn

around

> shortly.

>

> Kris

[Guest guest]

Donna: TGIF vent all you want,each of us is frustrated at one time or

another. I

agree about the power of atty. We each have one and a living will and we told

all

four of our kids,so they know in advance. You don't know how many of us have

been

there,done that..Sometimes you just can't get one answer. But you have to

persevere

because you and the rest of us have one aim..the best care and the most

comfort

we can give our loved ones. fell better,I hope you get your answers,hugs and

prayers

Nick & Jane

[Guest guest]

Hi Donna --

I'm kind of concerned about that platelet level. I know that 's

platelet level fell after part of his radiation treatment for his

lower back, and they told him to come in for a transfusion if he or

his wife noticed anything unusual. But I don't remember the actual

numbers. If Rick's platelets were 63 today and 137 last week, you

may want to go back in the posts and check what 's numbers

were. was also very tired, and slipped away the next day. I

wondered if he may have bled internally somehow.

The only colon cancer patient that I have known that developed a

brain met died in February. She had been fine at Christmas --

driving a car and everything. But she had no treatment options, and

just went downhill I guess.

I have got to know some of my oncologists fairly well. One of them

told me that he tries to " be strong " for his patients -- ie always be

encouraging, etc. He told me that he is often needing to take

antidepressants. I don't think it's easy work for them. And quite

often they just don't know how a patient will respond to a treatment,

although they want to do all they can to help.

Hope it turns a corner for the better for you and Rick,

Barry

> I know you all think I have a good attitude, ......... but today

you

> would be wrong. I'm not depressed ..... but I AM frustrated. I

have

> learned that having two different treatment Docs involved only

> complicates the chances of finding out what is going wrong ......

or

> even IF it is going wrong!

>

> Rick continues to get weaker and more tired each day. He completed

> his 10 radiation treatments Monday .......took his last 2mg

Decadron

> this morning ...... and feels worse than ever today. He had a

fever

> of 100.5 this morning and was still urinating very frequently, so I

> called the Oncs office. Our Onc is off today and Monday, so I got

> the " on call nurse " who I happen to know, thank goodness. Anyway,

> they had me bring Rick in for additional lab work (a repeat of

> Tuesday's lab with another glucose and a urine sample). It was all

> he could do to get up, take a shower, get dressed and make the

> trip. The lab tech said she could tell he was sick be looking at

> his veins. They just called and said he had a few white cells in

> his urine, but not much. They are calling in Augmentin since the

> levequin he took over the last couple weeks didn't work I guess.

But

> I doubt this is the main reason he seems to be getting worse.

>

> I asked her to help me understand why Rick seems to be going

> downhill instead of recovering from everything. She pretty much

> said that the radiation, the antibiotics, the lowered blood counts

> from the radiation, etc etc, COULD all be the reason. But, when I

> have asked the Rad Doc, he always says to ask the Onc ......when I

> ask our Oncs nurse .......she says " what did the Rad Doc say " ,

etc.

> Seems I can't get anyone to explain what's going on. I have no

> problem understanding that all of this takes a toll on his body and

> would therefore make him tired, etc. BUT ..... in our

conversations

> with the Onc & Rad Doc when discharged from the hospital, they both

> acted like he would start feeling better and even expected we'd

> start chemo again the very next week. Well, we've had to call that

> off each week since. The Onc nurse (on Tuesday) called to tell me

> the results of his blood and glucose test (because we went home

> instead of having chemo) and then had the nerve to ask if Rick

would

> be doing chemo the next week. Damn!! How would I know??!! I

> said " well,..... that would depend on whether he's feeling any

> better, don't you think??!! " Duh!! As soon as my notarized

Durable

> Power of Attorney " arrives in the mail (should be today), I am

going

> to set up a little appointment of my own with one or both of those

> Docs and get the straight on the situation. Until then, I'll just

> keep trying to keep Rick comfortable and " steam " !! ) His

> platelets were down to 63 today (from 85 on Tuesday, and 137 last

> week).

>

> OK ...... I'm starting to ramble ....... but I sure do feel better

> after venting to my e-buddies who totallly understand this

> frustration!! ) I'm much better now ......... thank you!!

>

> Donna

[Guest guest]

Hi Donna --

I'm kind of concerned about that platelet level. I know that 's

platelet level fell after part of his radiation treatment for his

lower back, and they told him to come in for a transfusion if he or

his wife noticed anything unusual. But I don't remember the actual

numbers. If Rick's platelets were 63 today and 137 last week, you

may want to go back in the posts and check what 's numbers

were. was also very tired, and slipped away the next day. I

wondered if he may have bled internally somehow.

The only colon cancer patient that I have known that developed a

brain met died in February. She had been fine at Christmas --

driving a car and everything. But she had no treatment options, and

just went downhill I guess.

I have got to know some of my oncologists fairly well. One of them

told me that he tries to " be strong " for his patients -- ie always be

encouraging, etc. He told me that he is often needing to take

antidepressants. I don't think it's easy work for them. And quite

often they just don't know how a patient will respond to a treatment,

although they want to do all they can to help.

Hope it turns a corner for the better for you and Rick,

Barry

> I know you all think I have a good attitude, ......... but today

you

> would be wrong. I'm not depressed ..... but I AM frustrated. I

have

> learned that having two different treatment Docs involved only

> complicates the chances of finding out what is going wrong ......

or

> even IF it is going wrong!

>

> Rick continues to get weaker and more tired each day. He completed

> his 10 radiation treatments Monday .......took his last 2mg

Decadron

> this morning ...... and feels worse than ever today. He had a

fever

> of 100.5 this morning and was still urinating very frequently, so I

> called the Oncs office. Our Onc is off today and Monday, so I got

> the " on call nurse " who I happen to know, thank goodness. Anyway,

> they had me bring Rick in for additional lab work (a repeat of

> Tuesday's lab with another glucose and a urine sample). It was all

> he could do to get up, take a shower, get dressed and make the

> trip. The lab tech said she could tell he was sick be looking at

> his veins. They just called and said he had a few white cells in

> his urine, but not much. They are calling in Augmentin since the

> levequin he took over the last couple weeks didn't work I guess.

But

> I doubt this is the main reason he seems to be getting worse.

>

> I asked her to help me understand why Rick seems to be going

> downhill instead of recovering from everything. She pretty much

> said that the radiation, the antibiotics, the lowered blood counts

> from the radiation, etc etc, COULD all be the reason. But, when I

> have asked the Rad Doc, he always says to ask the Onc ......when I

> ask our Oncs nurse .......she says " what did the Rad Doc say " ,

etc.

> Seems I can't get anyone to explain what's going on. I have no

> problem understanding that all of this takes a toll on his body and

> would therefore make him tired, etc. BUT ..... in our

conversations

> with the Onc & Rad Doc when discharged from the hospital, they both

> acted like he would start feeling better and even expected we'd

> start chemo again the very next week. Well, we've had to call that

> off each week since. The Onc nurse (on Tuesday) called to tell me

> the results of his blood and glucose test (because we went home

> instead of having chemo) and then had the nerve to ask if Rick

would

> be doing chemo the next week. Damn!! How would I know??!! I

> said " well,..... that would depend on whether he's feeling any

> better, don't you think??!! " Duh!! As soon as my notarized

Durable

> Power of Attorney " arrives in the mail (should be today), I am

going

> to set up a little appointment of my own with one or both of those

> Docs and get the straight on the situation. Until then, I'll just

> keep trying to keep Rick comfortable and " steam " !! ) His

> platelets were down to 63 today (from 85 on Tuesday, and 137 last

> week).

>

> OK ...... I'm starting to ramble ....... but I sure do feel better

> after venting to my e-buddies who totallly understand this

> frustration!! ) I'm much better now ......... thank you!!

>

> Donna

[Guest guest]

Thanks Barry! You're right ......... 's platelets were

extremely low .......more like 10 I believe! I will certainly be

keeping an eye on this number and watching for any kind of change

over the weekend. You're also very right about the

Oncologists ....... they have a very tough, many times depressing

job. We have become pretty close to ours ....... although he's not

afraid to tell you the facts, he does his best to keep Rick

encouraged. Unfortunately, he's been " out of pocket " this week and

won't be back to his office until Tuesday. I'm certain he'll talk

with me if I ask for an appointment. I just get nervous about

Rick's status from now until then. BUT ........ I work for the

Hospital ..... so if I get too worried, I'll just haul him to the ER

and get them to check his blood! ;O) I did some studying this

afternoon, on the internet of course, and it turns out that

radiation to the head and spine CAN cause the blood counts to drop.

So, I'm just sitting tight and watching him closely. He told my son

I'm " Mothering " him ) ........... oh well, whatever it takes!

Feeling less " Steamed " ,

Donna ;-)

> > I know you all think I have a good attitude, ......... but today

> you

> > would be wrong. I'm not depressed ..... but I AM frustrated. I

> have

> > learned that having two different treatment Docs involved only

> > complicates the chances of finding out what is going

wrong ......

> or

> > even IF it is going wrong!

> >

> > Rick continues to get weaker and more tired each day. He

completed

> > his 10 radiation treatments Monday .......took his last 2mg

> Decadron

> > this morning ...... and feels worse than ever today. He had a

> fever

> > of 100.5 this morning and was still urinating very frequently,

so I

> > called the Oncs office. Our Onc is off today and Monday, so I

got

> > the " on call nurse " who I happen to know, thank goodness.

Anyway,

> > they had me bring Rick in for additional lab work (a repeat of

> > Tuesday's lab with another glucose and a urine sample). It was

all

> > he could do to get up, take a shower, get dressed and make the

> > trip. The lab tech said she could tell he was sick be looking

at

> > his veins. They just called and said he had a few white cells

in

> > his urine, but not much. They are calling in Augmentin since

the

> > levequin he took over the last couple weeks didn't work I guess.

> But

> > I doubt this is the main reason he seems to be getting worse.

> >

> > I asked her to help me understand why Rick seems to be going

> > downhill instead of recovering from everything. She pretty much

> > said that the radiation, the antibiotics, the lowered blood

counts

> > from the radiation, etc etc, COULD all be the reason. But, when

I

> > have asked the Rad Doc, he always says to ask the Onc ......when

I

> > ask our Oncs nurse .......she says " what did the Rad Doc say " ,

> etc.

> > Seems I can't get anyone to explain what's going on. I have no

> > problem understanding that all of this takes a toll on his body

and

> > would therefore make him tired, etc. BUT ..... in our

> conversations

> > with the Onc & Rad Doc when discharged from the hospital, they

both

> > acted like he would start feeling better and even expected we'd

> > start chemo again the very next week. Well, we've had to call

that

> > off each week since. The Onc nurse (on Tuesday) called to tell

me

> > the results of his blood and glucose test (because we went home

> > instead of having chemo) and then had the nerve to ask if Rick

> would

> > be doing chemo the next week. Damn!! How would I know??!! I

> > said " well,..... that would depend on whether he's feeling any

> > better, don't you think??!! " Duh!! As soon as my notarized

> Durable

> > Power of Attorney " arrives in the mail (should be today), I am

> going

> > to set up a little appointment of my own with one or both of

those

> > Docs and get the straight on the situation. Until then, I'll

just

> > keep trying to keep Rick comfortable and " steam " !! ) His

> > platelets were down to 63 today (from 85 on Tuesday, and 137

last

> > week).

> >

> > OK ...... I'm starting to ramble ....... but I sure do feel

better

> > after venting to my e-buddies who totallly understand this

> > frustration!! ) I'm much better now ......... thank you!!

> >

> > Donna

[Guest guest]

Thanks Barry! You're right ......... 's platelets were

extremely low .......more like 10 I believe! I will certainly be

keeping an eye on this number and watching for any kind of change

over the weekend. You're also very right about the

Oncologists ....... they have a very tough, many times depressing

job. We have become pretty close to ours ....... although he's not

afraid to tell you the facts, he does his best to keep Rick

encouraged. Unfortunately, he's been " out of pocket " this week and

won't be back to his office until Tuesday. I'm certain he'll talk

with me if I ask for an appointment. I just get nervous about

Rick's status from now until then. BUT ........ I work for the

Hospital ..... so if I get too worried, I'll just haul him to the ER

and get them to check his blood! ;O) I did some studying this

afternoon, on the internet of course, and it turns out that

radiation to the head and spine CAN cause the blood counts to drop.

So, I'm just sitting tight and watching him closely. He told my son

I'm " Mothering " him ) ........... oh well, whatever it takes!

Feeling less " Steamed " ,

Donna ;-)

> > I know you all think I have a good attitude, ......... but today

> you

> > would be wrong. I'm not depressed ..... but I AM frustrated. I

> have

> > learned that having two different treatment Docs involved only

> > complicates the chances of finding out what is going

wrong ......

> or

> > even IF it is going wrong!

> >

> > Rick continues to get weaker and more tired each day. He

completed

> > his 10 radiation treatments Monday .......took his last 2mg

> Decadron

> > this morning ...... and feels worse than ever today. He had a

> fever

> > of 100.5 this morning and was still urinating very frequently,

so I

> > called the Oncs office. Our Onc is off today and Monday, so I

got

> > the " on call nurse " who I happen to know, thank goodness.

Anyway,

> > they had me bring Rick in for additional lab work (a repeat of

> > Tuesday's lab with another glucose and a urine sample). It was

all

> > he could do to get up, take a shower, get dressed and make the

> > trip. The lab tech said she could tell he was sick be looking

at

> > his veins. They just called and said he had a few white cells

in

> > his urine, but not much. They are calling in Augmentin since

the

> > levequin he took over the last couple weeks didn't work I guess.

> But

> > I doubt this is the main reason he seems to be getting worse.

> >

> > I asked her to help me understand why Rick seems to be going

> > downhill instead of recovering from everything. She pretty much

> > said that the radiation, the antibiotics, the lowered blood

counts

> > from the radiation, etc etc, COULD all be the reason. But, when

I

> > have asked the Rad Doc, he always says to ask the Onc ......when

I

> > ask our Oncs nurse .......she says " what did the Rad Doc say " ,

> etc.

> > Seems I can't get anyone to explain what's going on. I have no

> > problem understanding that all of this takes a toll on his body

and

> > would therefore make him tired, etc. BUT ..... in our

> conversations

> > with the Onc & Rad Doc when discharged from the hospital, they

both

> > acted like he would start feeling better and even expected we'd

> > start chemo again the very next week. Well, we've had to call

that

> > off each week since. The Onc nurse (on Tuesday) called to tell

me

> > the results of his blood and glucose test (because we went home

> > instead of having chemo) and then had the nerve to ask if Rick

> would

> > be doing chemo the next week. Damn!! How would I know??!! I

> > said " well,..... that would depend on whether he's feeling any

> > better, don't you think??!! " Duh!! As soon as my notarized

> Durable

> > Power of Attorney " arrives in the mail (should be today), I am

> going

> > to set up a little appointment of my own with one or both of

those

> > Docs and get the straight on the situation. Until then, I'll

just

> > keep trying to keep Rick comfortable and " steam " !! ) His

> > platelets were down to 63 today (from 85 on Tuesday, and 137

last

> > week).

> >

> > OK ...... I'm starting to ramble ....... but I sure do feel

better

> > after venting to my e-buddies who totallly understand this

> > frustration!! ) I'm much better now ......... thank you!!

> >

> > Donna