We got the results of Tim's bone marrow biopsy. He's in a BIOCHEMICAL CR!!!!!!!!!!!!!!!!!!!!
yipppeeeeeeee!!!!! Man I was not holding my breath on this one. We are very happy to hear
this news. The doctor basically told us that there was a good chance it would not come
out negative. I have not seen the report yet but he reviewed it and his head nurse just e-mailed
me the good news this morning. Oh Happy Day!!! I teared up again. It's so hard
to wait out test results as y'all know. Sometimes you don't even realize how tense you are until
you hear the news and cry from relief. Considering how hard 2007 was, and dealing with the
devastation of a failed AND botched stem cell transplant, Tim so deserves to have things go
right for a change. Heck, we all do. We are very grateful. I don't think his doctor saw this coming
at all after that transplant tanked. All I can say is that my husband has a very large amount
of people praying for him and pulling for him. I'm hopeful that 2009 will be so much better
for us than the prior 2 years were. We're off to a great start!!!
Monday, January 26, 2009
Tuesday, January 20, 2009
It's a new day
I have never been too political but the shape this country is in has been getting to me and this
year got me a little more fired up in that dept. I could hardly tear myself away from the TV
today and I just keep hoping that things are gonna turn around. When the Bushes got into
that huge helicopter, I kept thinking, "the big green bird flies the turkey away." Tim said
he kinda felt bad for him and thought it must be so hard to leave and I, who am usually the
bleeding heart type, was like "hurry up and get that bird in the air." Good grief what a mess
these last 8 years have been and I have said it before, I honestly don't think he was ever truly
elected, at least that last time, I know he wasn't. I have had an old song stuck in my head all
day and wish someone would have thought to perform it especially since it could not be more
right for this occasion and half of the artists that have performed for the new president have
covered this tune. It's an old Curtis Mayfield song that he wrote after a civil rights march on
Washington. It's "People Get Ready." Some of you younger folk may know the Jeff Beck/Rod
Stewart version. I tell ya, listen to it on you tube and tell me if that would not have been
the PERFECT theme song for this day in history. Well, I've got faith and I'm ready to get
on board!
year got me a little more fired up in that dept. I could hardly tear myself away from the TV
today and I just keep hoping that things are gonna turn around. When the Bushes got into
that huge helicopter, I kept thinking, "the big green bird flies the turkey away." Tim said
he kinda felt bad for him and thought it must be so hard to leave and I, who am usually the
bleeding heart type, was like "hurry up and get that bird in the air." Good grief what a mess
these last 8 years have been and I have said it before, I honestly don't think he was ever truly
elected, at least that last time, I know he wasn't. I have had an old song stuck in my head all
day and wish someone would have thought to perform it especially since it could not be more
right for this occasion and half of the artists that have performed for the new president have
covered this tune. It's an old Curtis Mayfield song that he wrote after a civil rights march on
Washington. It's "People Get Ready." Some of you younger folk may know the Jeff Beck/Rod
Stewart version. I tell ya, listen to it on you tube and tell me if that would not have been
the PERFECT theme song for this day in history. Well, I've got faith and I'm ready to get
on board!
Friday, January 16, 2009
Name that remission level
Yesterday Tim had his check-up. Is it crazy to say we had a good time at the oncologist's office?
After seeing his current labs and finding out he is still in a remission, the pressure was almost off
and we all were joking around the rest of the visit. His doc is a funny guy and they all use a lot
of "comic relief" around there and that's right up our alley so we chime on in. Tim had a bone marrow biopsy done to see if he is in a "complete molecular remission." Right now, he is in a
"complete immunofaxation remission" and the head nurse said he may meet the requirements
for a new term that is called a "stringent something or other remission." I'd say it's just semantics but of course the better you are, the better you are doncha know. So we went into
the lab area to get ready for the biopsy. First, I went to the biggest nurse there, who is terrific,
and told her if the doctor hurt Tim, I was calling her in to help me whoop his ass good. She gave
me the thumbs up and told me she had our back. I told the doc, who is about 6'3" and admits to
being 275 lbs. that these nurses were all gonna help me(I didn't think my 5'4" 123 lbs. was gonna
do much) if he didn't fly right and he told me, "You don't want to F--- with Gladys(the nurse that had our back) she could probably whoop me all by herself." Then his head nurse
was mouthing off to him like crazy in the room. It was in jest but she was having a stressful day so I told her to knock it off cause the doc was gonna take his aggression out on
my husband's poor little ass. I could tell that parts of this procedure hurt. It's hard to see someone you love get hurt but Tim has a pretty high pain threshold and I would not let him go
through anything without me there. He's pretty darn sore today though. I still must admit that
I prefer women doctors. They are so much gentler. The only bad news yesterday was that I
found out that Tim has more bone involvement than we knew. When he had all his tests done
2 years ago, there was a woman working there who gave us the results and just said, he has a little spot here(pointing to lumbar area) and a little spot here(pointing to thoracic area). His
doc mentioned osteopenia(precurser to osteoporosis) and that was all we were told. I requested
new scans to keep on top of anything and found out yesterday about the existing greater bone involvement which apparently includes a compression fracture. I said, "no one ever told us
he had this." Not happy about that. I hate it when medical people do not explain things correctly.
Not everyone is clueless about medical terms. They should not assume they are or do not want to know the whole story. But all in all, it was a positive visit. We're gonna stay on top of his bone
health and we are very grateful that his remission is holding and giving him a nice long break
from chemo. LOOOONNNNNGGGGGGG may it last!!!!
After seeing his current labs and finding out he is still in a remission, the pressure was almost off
and we all were joking around the rest of the visit. His doc is a funny guy and they all use a lot
of "comic relief" around there and that's right up our alley so we chime on in. Tim had a bone marrow biopsy done to see if he is in a "complete molecular remission." Right now, he is in a
"complete immunofaxation remission" and the head nurse said he may meet the requirements
for a new term that is called a "stringent something or other remission." I'd say it's just semantics but of course the better you are, the better you are doncha know. So we went into
the lab area to get ready for the biopsy. First, I went to the biggest nurse there, who is terrific,
and told her if the doctor hurt Tim, I was calling her in to help me whoop his ass good. She gave
me the thumbs up and told me she had our back. I told the doc, who is about 6'3" and admits to
being 275 lbs. that these nurses were all gonna help me(I didn't think my 5'4" 123 lbs. was gonna
do much) if he didn't fly right and he told me, "You don't want to F--- with Gladys(the nurse that had our back) she could probably whoop me all by herself." Then his head nurse
was mouthing off to him like crazy in the room. It was in jest but she was having a stressful day so I told her to knock it off cause the doc was gonna take his aggression out on
my husband's poor little ass. I could tell that parts of this procedure hurt. It's hard to see someone you love get hurt but Tim has a pretty high pain threshold and I would not let him go
through anything without me there. He's pretty darn sore today though. I still must admit that
I prefer women doctors. They are so much gentler. The only bad news yesterday was that I
found out that Tim has more bone involvement than we knew. When he had all his tests done
2 years ago, there was a woman working there who gave us the results and just said, he has a little spot here(pointing to lumbar area) and a little spot here(pointing to thoracic area). His
doc mentioned osteopenia(precurser to osteoporosis) and that was all we were told. I requested
new scans to keep on top of anything and found out yesterday about the existing greater bone involvement which apparently includes a compression fracture. I said, "no one ever told us
he had this." Not happy about that. I hate it when medical people do not explain things correctly.
Not everyone is clueless about medical terms. They should not assume they are or do not want to know the whole story. But all in all, it was a positive visit. We're gonna stay on top of his bone
health and we are very grateful that his remission is holding and giving him a nice long break
from chemo. LOOOONNNNNGGGGGGG may it last!!!!
Thursday, January 1, 2009
Immunotherapy or hogwash?
Awhile back, I wrote about a Phillipino patient who was eating pigeon meat based on the belief
that pigeons have the ability to make antibodies for MM. Supposedly, he knows a man who
still lives in the Phillipines and is doing well with this protocol while not getting modern
treatment for his MM. There was another thing I was told about shortly after Tim was
diagnosed that makes me wonder sometimes. I was told by a farm wife in Vermont, who
we have known many years, of a cancer patient she knows who was basically told by his doc that there
was nothing more they could do for him. I am trying to remember what type of cancer he
had. I think it was a lymphoma and I also think he had other issues on top of that. I can't remember exactly. Anyway,
the guy started doing his own thing and what he supposedly did was inject a cow with his cancer
cells. Then he makes yogurt from the milk of this cow and eats it. He swears that the cow is making antibodies to his disease and this is what is keeping him alive long after the doctors
"wrote him off." This farm wife owns the dairy farm across the street from a house Tim's
folks bought 30+ years ago. She told me, "anytime you want to try this, we'll supply the cow."
It sounds crazy, I know, but I have to admit that it makes ya think. It is true that different
species are prone to or kinda exempt from different illnesses. We know that animals have
immunities to things we don't and vice versa. If a breastfeeding mother can
pass on immunities to her child through breast milk, does this process sound so very ridiculous?
I don't know. I've heard crazier sounding things than this. It sounds like one of those
"couldn't hoit" situations, unless you're the cow.
that pigeons have the ability to make antibodies for MM. Supposedly, he knows a man who
still lives in the Phillipines and is doing well with this protocol while not getting modern
treatment for his MM. There was another thing I was told about shortly after Tim was
diagnosed that makes me wonder sometimes. I was told by a farm wife in Vermont, who
we have known many years, of a cancer patient she knows who was basically told by his doc that there
was nothing more they could do for him. I am trying to remember what type of cancer he
had. I think it was a lymphoma and I also think he had other issues on top of that. I can't remember exactly. Anyway,
the guy started doing his own thing and what he supposedly did was inject a cow with his cancer
cells. Then he makes yogurt from the milk of this cow and eats it. He swears that the cow is making antibodies to his disease and this is what is keeping him alive long after the doctors
"wrote him off." This farm wife owns the dairy farm across the street from a house Tim's
folks bought 30+ years ago. She told me, "anytime you want to try this, we'll supply the cow."
It sounds crazy, I know, but I have to admit that it makes ya think. It is true that different
species are prone to or kinda exempt from different illnesses. We know that animals have
immunities to things we don't and vice versa. If a breastfeeding mother can
pass on immunities to her child through breast milk, does this process sound so very ridiculous?
I don't know. I've heard crazier sounding things than this. It sounds like one of those
"couldn't hoit" situations, unless you're the cow.
Monday, December 29, 2008
Drug stories
So a funny thing happened and a first for Tim's wood flooring business. We had a woman call
and ask Tim if he or his employee stole 3 vicadin out of her kitchen cabinet while they
were re-finishing her floors. To us, this is funny. You see Tim has a kitchen cabinet full of
painkillers, tranquilizers and heaven knows what all left over from his stem cell transplant and our employee has Crohn's disease, has had 2 surgeries on his gut ,and has his own cabinet full of stuff. His mom has MS so between our 2 households, we could keep the whole damn town
higher than a kite if we wanted to and certainly have no need to steal a few vicadins. Tim assured her that it was not them. We found out later from her brother that his brother-in-law had
recently been found to have a drinking problem and apparently booze wasn't his only vice and
he saw the day they were having work done on their house as a ideal chance to steal his wife's
new pain pills she got after oral surgery whilst throwing someone else under the bus for it. Kinda sad. By the way, if you have any Ativan around, I just found out a few weeks ago, it is the best
medicine for a hangover. We had a X-mas party a few weeks ago. Afterward, we went over to
our neighbors' whose party went even later than ours. Tim is not used to drinking that much
anymore and didn't think he had that much beer but when your party starts at 5p.m. and you
don't end till about 2 or 2:30 a.m., you can put down a few brews. He was so miserable the next morning. I was surprised. I checked his eyes before I left the neighbors' at 12:30 and he looked
fine. Tim was born cross-eyed. His eyes were operated on to straighten them but he has one
that is slightly weaker than the other and when he drinks, it tends to float in. I know he's buzzed
when I see that or really tired. When they both float in(this is rare), he's toast and it's time to cut him off! So he had this terrible headache and he was super nauseous. I said, "what the heck, let's try something from the
old cabinet." So I gave him 2 tylenol and 1 ativan and it was "good night nurse!" The boy was
out cold for 5 1/2 hours and when he woke up, it was dark again and he didn't know what hit him but he felt MUCH better. So the last funny drug story happened just awhile back at a
football game Olivia was cheerleading at. The mom of another cheerleader has some medical
problems and we talk shop a bit. She has lung issues and tells me that she wound up with some
fungal pneumonia thingy and I said, "you mean aspergillosis?" and she said "Yeah, that was it!"
Aspergillosis is something that used to be fatal and MM'ers and those going through transplant
can be at risk. It is also something you can get from smoking pot which is often contaminated with the fungus. This woman is 49, has a 19 year old and 11 year old twins. So kidding around
I said to her, "better stay away from pot," and she turned to me and said "WHAT?!!" I knew
she was too hip to be offended so I was surprised when she stopped watching the game and
looked at me so seriously. Well, it turned out she had smoked pot at a party. Hadn't done it
in many years and someone offered and she figured "what the heck." I laughed. I had been just
fooling around and it turns out she never knew this, why would she, but I guess I'm glad I
brought it up cause she has enough medical problems to deal with and could have gotten this
again and never known the cause. Ya just never know who parties hard. I am such a tea-totaller
compaired to most. I used to think I was pretty hip. My husband assures me I am SO not.
I guess I'm getting old.
and ask Tim if he or his employee stole 3 vicadin out of her kitchen cabinet while they
were re-finishing her floors. To us, this is funny. You see Tim has a kitchen cabinet full of
painkillers, tranquilizers and heaven knows what all left over from his stem cell transplant and our employee has Crohn's disease, has had 2 surgeries on his gut ,and has his own cabinet full of stuff. His mom has MS so between our 2 households, we could keep the whole damn town
higher than a kite if we wanted to and certainly have no need to steal a few vicadins. Tim assured her that it was not them. We found out later from her brother that his brother-in-law had
recently been found to have a drinking problem and apparently booze wasn't his only vice and
he saw the day they were having work done on their house as a ideal chance to steal his wife's
new pain pills she got after oral surgery whilst throwing someone else under the bus for it. Kinda sad. By the way, if you have any Ativan around, I just found out a few weeks ago, it is the best
medicine for a hangover. We had a X-mas party a few weeks ago. Afterward, we went over to
our neighbors' whose party went even later than ours. Tim is not used to drinking that much
anymore and didn't think he had that much beer but when your party starts at 5p.m. and you
don't end till about 2 or 2:30 a.m., you can put down a few brews. He was so miserable the next morning. I was surprised. I checked his eyes before I left the neighbors' at 12:30 and he looked
fine. Tim was born cross-eyed. His eyes were operated on to straighten them but he has one
that is slightly weaker than the other and when he drinks, it tends to float in. I know he's buzzed
when I see that or really tired. When they both float in(this is rare), he's toast and it's time to cut him off! So he had this terrible headache and he was super nauseous. I said, "what the heck, let's try something from the
old cabinet." So I gave him 2 tylenol and 1 ativan and it was "good night nurse!" The boy was
out cold for 5 1/2 hours and when he woke up, it was dark again and he didn't know what hit him but he felt MUCH better. So the last funny drug story happened just awhile back at a
football game Olivia was cheerleading at. The mom of another cheerleader has some medical
problems and we talk shop a bit. She has lung issues and tells me that she wound up with some
fungal pneumonia thingy and I said, "you mean aspergillosis?" and she said "Yeah, that was it!"
Aspergillosis is something that used to be fatal and MM'ers and those going through transplant
can be at risk. It is also something you can get from smoking pot which is often contaminated with the fungus. This woman is 49, has a 19 year old and 11 year old twins. So kidding around
I said to her, "better stay away from pot," and she turned to me and said "WHAT?!!" I knew
she was too hip to be offended so I was surprised when she stopped watching the game and
looked at me so seriously. Well, it turned out she had smoked pot at a party. Hadn't done it
in many years and someone offered and she figured "what the heck." I laughed. I had been just
fooling around and it turns out she never knew this, why would she, but I guess I'm glad I
brought it up cause she has enough medical problems to deal with and could have gotten this
again and never known the cause. Ya just never know who parties hard. I am such a tea-totaller
compaired to most. I used to think I was pretty hip. My husband assures me I am SO not.
I guess I'm getting old.
Saturday, December 20, 2008
What a year!
Well, I'm getting back on some solid ground it seems. My mammogram situation is finally
resolved, I think. I had 2 radiologists who disagreed on whether I needed further testing
or not so I went straight to a breast surgeon with all my mammos and he said, "I think you're
OK but let's do a sonagram." I was scared. We went to the hospital at 9 am with a snow storm
barelling down on us and I was convinced the technician saw something. She came back in and said it was normal.
I teared up. It's been a heck of a year. Thankfully, Tim has done wonderfully this year but
I have had a time of it and the trials of owning our 2-family house really put a damper on
things. I feel for my parents. Tim is like a son to them and his illness really hits them hard and of course I've had my problems. I have one sister getting a divorce. My youngest one just had her
mammogram flagged too and needs more testing and my older sister, who works part time
in the hospital I was in yesterday morning wound up in its ER at the same time with a gallbladder attack and
as a final HOO-RAH to a hard year, she offered up her gallbladder as a sacrifice to the "new
year Gods" last night. I told her that as much as I didn't want to see her go through this, I was glad it was her gallbladder and not my boob that had to be sacrificed. She felt the same way.
The girl's a trooper.
So even though I am behind with X-mas stuff, I am trying to squeeze out some joy now that
some hard times are behind us. Our new tenant moved in and so far, he seems nice. Hopefully,
we will have some smooth sailing on that front now. I will be glad to see 2008 end. All in all, it
has been really tough for so many people. The economy is going to "you know where" in a
hand basket and I wish this war could be ended. We really need this whole country to get
back on solid ground. I hope 2009 sees a lot of improvement in that respect.
Happy holidays to you and yours and best wishes for a blessed 2009.
resolved, I think. I had 2 radiologists who disagreed on whether I needed further testing
or not so I went straight to a breast surgeon with all my mammos and he said, "I think you're
OK but let's do a sonagram." I was scared. We went to the hospital at 9 am with a snow storm
barelling down on us and I was convinced the technician saw something. She came back in and said it was normal.
I teared up. It's been a heck of a year. Thankfully, Tim has done wonderfully this year but
I have had a time of it and the trials of owning our 2-family house really put a damper on
things. I feel for my parents. Tim is like a son to them and his illness really hits them hard and of course I've had my problems. I have one sister getting a divorce. My youngest one just had her
mammogram flagged too and needs more testing and my older sister, who works part time
in the hospital I was in yesterday morning wound up in its ER at the same time with a gallbladder attack and
as a final HOO-RAH to a hard year, she offered up her gallbladder as a sacrifice to the "new
year Gods" last night. I told her that as much as I didn't want to see her go through this, I was glad it was her gallbladder and not my boob that had to be sacrificed. She felt the same way.
The girl's a trooper.
So even though I am behind with X-mas stuff, I am trying to squeeze out some joy now that
some hard times are behind us. Our new tenant moved in and so far, he seems nice. Hopefully,
we will have some smooth sailing on that front now. I will be glad to see 2008 end. All in all, it
has been really tough for so many people. The economy is going to "you know where" in a
hand basket and I wish this war could be ended. We really need this whole country to get
back on solid ground. I hope 2009 sees a lot of improvement in that respect.
Happy holidays to you and yours and best wishes for a blessed 2009.
Saturday, December 6, 2008
Too many monkeys on my back
Well I guess if I didn't complain, I wouldn't be left with much to say. The fact is that
I just have too many bad things hitting me from all angles and I am sick, sick, SICK
of it all. It turns out my mammo situation is still not settled and my tenant is not
paying her rent. I had 2 deals fall through with new tenants and now finally have
a deal that looks like it will work(if a moving van shows up on the 15th, I guess it's
a go). I am still so behind around the house and just this week paid a very heavy
price(literally) for that. Tim called me a little after 5 pm the other day and had
just been pulled over in a police trap. It seems I misplaced the registration for his
work truck and it was 3 days past the expiration date. Tim got 2 tickets. Unfortunately,
the one ticket involved weighing the truck and you get charged by your weight for being
over the registered amount(which is 0 when you are unregistered). The 2 tickets together
will cost $1284.00. Merry X-mas from the NJ county police dept. Yippee! I went upstairs to
my room and just cried. I am so mad at myself. Here is my husband working and doing things
he should not be doing in his condition and I can't even hold up my end of the deal. Then we have
our tenant who apparantly thinks there's nothing wrong with jetting off to Disneyworld
while letting us support her and her kids. I am trying to find my grateful side. It's not that
we don't have the money, it's the principal of the thing. Many people who live in this area
and don't like it feel that there really are many more jerks living in this metropolitan area
and that it is different when you move out of it. I always wonder if it's true. I suspect it is
but Tim always tells me there are #%&*@#!'s everywhere you go and since I seem to be
a magnet for them, I guess they'd find me no matter where I went. I try so hard to change
my outlook but when things keep happening one after the other, one does get a bit disgusted.
BUT TIM HAS NO M-SPIKE and I am gonna keep reminding myself of that over and over.
And SANTA'S coming for crying out loud!! It's time to be happy. It's just so hard to soar like
an eagle when you're surrounded by turkeys.
Dear Santa, SEND PROZAC
I just have too many bad things hitting me from all angles and I am sick, sick, SICK
of it all. It turns out my mammo situation is still not settled and my tenant is not
paying her rent. I had 2 deals fall through with new tenants and now finally have
a deal that looks like it will work(if a moving van shows up on the 15th, I guess it's
a go). I am still so behind around the house and just this week paid a very heavy
price(literally) for that. Tim called me a little after 5 pm the other day and had
just been pulled over in a police trap. It seems I misplaced the registration for his
work truck and it was 3 days past the expiration date. Tim got 2 tickets. Unfortunately,
the one ticket involved weighing the truck and you get charged by your weight for being
over the registered amount(which is 0 when you are unregistered). The 2 tickets together
will cost $1284.00. Merry X-mas from the NJ county police dept. Yippee! I went upstairs to
my room and just cried. I am so mad at myself. Here is my husband working and doing things
he should not be doing in his condition and I can't even hold up my end of the deal. Then we have
our tenant who apparantly thinks there's nothing wrong with jetting off to Disneyworld
while letting us support her and her kids. I am trying to find my grateful side. It's not that
we don't have the money, it's the principal of the thing. Many people who live in this area
and don't like it feel that there really are many more jerks living in this metropolitan area
and that it is different when you move out of it. I always wonder if it's true. I suspect it is
but Tim always tells me there are #%&*@#!'s everywhere you go and since I seem to be
a magnet for them, I guess they'd find me no matter where I went. I try so hard to change
my outlook but when things keep happening one after the other, one does get a bit disgusted.
BUT TIM HAS NO M-SPIKE and I am gonna keep reminding myself of that over and over.
And SANTA'S coming for crying out loud!! It's time to be happy. It's just so hard to soar like
an eagle when you're surrounded by turkeys.
Dear Santa, SEND PROZAC
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