Well I have said that I was never that impressed with either of the presidential candidates
but I tend to vote democratic and I must say that I am hoping that the choice made will improve the racism problem in this country. I am pleased with the outcome
and even though I would vote Republican if I liked the candidate, I felt Palin was a huge error
made by the Republican party. I think most people shivered at the thought that she could wind
up being our commander in chief if something happened to McCain. SCARY stuff!! I actually felt
bad for McCain because I think he had a chance prior to her arrival on the scene. I think his hard work was all for nothing now. I am such an overempathizer. I feel sorry for everyone. Anyway,
I will say as far
as racism goes, Morgan Freeman said something in an interview that struck me and I always
think it of when the racism subject comes up. The interviewer was asking him a question about
him being the first black man to get an oscar or something like that(maybe he was not the first
but I think he was) and Mr. Freeman said very pointedly that racism is alive and well in this
country until people start referring to him as just "A MAN" and not a black man. It was one
heckuva point and the interviewer was a little taken aback if I remember correctly since he had just referred to him several times as a black man(OOPS). That simple
statement was a lightbulb moment and so true. Unfortunately racism is still rampant. I don't know if it will be otherwise in my lifetime but any improvement is better than none.
So onto myeloma news. I went to a Gilda's Club last night to hear Tim's doc give a speech. Dr.
Siegel actually treated Gilda Radner when he was at Sloan Kettering years ago.
I am so glad I made this meeting. I did not think I would learn too much but I did learn some things that put
me at ease. I wish I did not have to learn about this disease but I have to say I find it fascinating.
I was literally on the edge of my seat soaking up everything he said.
It is exciting to see the rapid progress being made and interesting to hear others' stories. It
gives me hope. Tim's doc is a great guy and smart as heck without having a huge ego. I have said
that he does shoot from the hip though and at times that is rough. The last talk he gave that I
attended had us all wishing we had swallowed a handful of Prozac before we arrived. He can
be a little pessimistic. But last night was different. It was plain to see that he feels all bets are
off when it comes to those old short life expectancies. He feels the staging systems have nothing
to do with outcome which I knew but for people who were diagnosed at stage III and obsessing,
they were obviously relieved. I left this speech feeling very hopeful as did a lot of other attendees. He admitted that there is so much that is not known about MM but we are making
progress bigtime. I think it must be exciting too for the doctors treating MM now that they can
really extend lives for long periods and in some cases cure folks. That's a good thing because excited doctors and researchers make big strides. Of course it helps alot too when drug companies see huge dollar signs, doesn't it. Whatever it takes, I say. As long as it keeps us
moving towards "manageable chronic disease" and eventually a cure.
Thursday, November 6, 2008
Wednesday, October 29, 2008
No rest for the weary
So I wrapped up going to real estate school and passed all the tests and thought
FINALLY I am gonna get back to work on my house. WRONG. I just started painting
Olivia's room(actually I started in summer and had to stop then too) and I get an e-mail from a tenant telling me she is breaking the lease
and bailing out 3 weeks before Christmas. Man I tell ya, I can't cut a break. I also
wound up being class mom for Olivia's class so I am coordinating a Halloween party
on top of things and I do not have any time to myself again. I called a gal who was very disappointed she missed renting this
apt. last spring and she and her husband loved the place and are jumping for joy. It was
rented lickity split again thank goodness but what a pain.
I'm just ticked as usual that honest people are so few and far between. I do let people out
of leases for legitimate reasons like job moves and such but this girl is just fickle and
doesn't know what she wants. I say adios to that. I've got no stomach for drama queens.
I realize that this blog has become too much personal griping and a lot of it not about
myeloma. I may be boring the socks off people reading this but to me it is great news
that I am not kvetching about MM. This is a good sign. Tim did just have labs drawn
on Monday. His doc's office is "standing room only" every time we go. We will find out
on 11/10 what the results are. I just spoke to a man on the myeloma listserv that went
to a 0 m-spike from a Velcade cocktail and stayed in remission for 5 years before needing
to address the situation again. I pray we get lucky like that. As always, I am nervous.
These appointments just stink. Again we were the youngest ones there by far and this
woman was just gawking at us and I could practically see the wheels spinning as she
tried to figure out which one of us "had it". It's pretty easy to guess. The patient is
the one with the pee jug in a plastic bag under his chair. I must say that life feels pretty
normal right now. I sometimes have to say the words to myself that Tim is in remission
because it may not be the same type of remission you can get with the more curable things
but I need to give it credit. It is a remission. So many people just can't believe how great he looks.
I'm glad for him. We just went to a very touching meeting of transplantees from HUMC where
they celebrated the people and the docs and such . A few docs spoke and then some patients.
One man was a doctor himself who'd had a transplant and started to weep during his speech. There was not a dry eye in the tent.
Unbelievably touching. Make no mistake, these transplants are miracles in many ways. And to
see this man come up and bear hug our transplant doctor was just so incredible. The doctor
had just been hanging his head at his seat because he was so overcome by the speech. This was a room(well tent in a parking lot) that was so full of love and hope and gratitude and a brotherhood(sisterhood) shared by all these people who had gone through this. Powerful stuff, I tell ya. So where
was I going with this? OH YEAH. So we see these nurses that Tim was treated by during
aphoresis and transplant and I go to the ladies room(turned out to be a porta-san, I decided
it could wait, you'd think this hospital could pull out a few stops but I guess not) anyway,
the minute I got outta site, Tim goes up to the cutest blond nurse and just had to reintroduce
himself now that he has his hair and moustache back. I walk in and she's kissing him and all.
I thought, that little sneak!!! Then I said, ya know, let him be. Who wouldn't want to show them
selves as they really look. Tim has great hair and hated losing it. I suppose I would have wanted
these gals to see me as I really am too. All the nurses at that hospital were just great too. They
were all so nice to him. The one good thing about him being young is he got a lot of attention from the nurses!! Especially on the days I ran home to do errands and see Olivia. At least I
know he was getting good care. They need to hire some ugly nurses though. Give a girl a break.
FINALLY I am gonna get back to work on my house. WRONG. I just started painting
Olivia's room(actually I started in summer and had to stop then too) and I get an e-mail from a tenant telling me she is breaking the lease
and bailing out 3 weeks before Christmas. Man I tell ya, I can't cut a break. I also
wound up being class mom for Olivia's class so I am coordinating a Halloween party
on top of things and I do not have any time to myself again. I called a gal who was very disappointed she missed renting this
apt. last spring and she and her husband loved the place and are jumping for joy. It was
rented lickity split again thank goodness but what a pain.
I'm just ticked as usual that honest people are so few and far between. I do let people out
of leases for legitimate reasons like job moves and such but this girl is just fickle and
doesn't know what she wants. I say adios to that. I've got no stomach for drama queens.
I realize that this blog has become too much personal griping and a lot of it not about
myeloma. I may be boring the socks off people reading this but to me it is great news
that I am not kvetching about MM. This is a good sign. Tim did just have labs drawn
on Monday. His doc's office is "standing room only" every time we go. We will find out
on 11/10 what the results are. I just spoke to a man on the myeloma listserv that went
to a 0 m-spike from a Velcade cocktail and stayed in remission for 5 years before needing
to address the situation again. I pray we get lucky like that. As always, I am nervous.
These appointments just stink. Again we were the youngest ones there by far and this
woman was just gawking at us and I could practically see the wheels spinning as she
tried to figure out which one of us "had it". It's pretty easy to guess. The patient is
the one with the pee jug in a plastic bag under his chair. I must say that life feels pretty
normal right now. I sometimes have to say the words to myself that Tim is in remission
because it may not be the same type of remission you can get with the more curable things
but I need to give it credit. It is a remission. So many people just can't believe how great he looks.
I'm glad for him. We just went to a very touching meeting of transplantees from HUMC where
they celebrated the people and the docs and such . A few docs spoke and then some patients.
One man was a doctor himself who'd had a transplant and started to weep during his speech. There was not a dry eye in the tent.
Unbelievably touching. Make no mistake, these transplants are miracles in many ways. And to
see this man come up and bear hug our transplant doctor was just so incredible. The doctor
had just been hanging his head at his seat because he was so overcome by the speech. This was a room(well tent in a parking lot) that was so full of love and hope and gratitude and a brotherhood(sisterhood) shared by all these people who had gone through this. Powerful stuff, I tell ya. So where
was I going with this? OH YEAH. So we see these nurses that Tim was treated by during
aphoresis and transplant and I go to the ladies room(turned out to be a porta-san, I decided
it could wait, you'd think this hospital could pull out a few stops but I guess not) anyway,
the minute I got outta site, Tim goes up to the cutest blond nurse and just had to reintroduce
himself now that he has his hair and moustache back. I walk in and she's kissing him and all.
I thought, that little sneak!!! Then I said, ya know, let him be. Who wouldn't want to show them
selves as they really look. Tim has great hair and hated losing it. I suppose I would have wanted
these gals to see me as I really am too. All the nurses at that hospital were just great too. They
were all so nice to him. The one good thing about him being young is he got a lot of attention from the nurses!! Especially on the days I ran home to do errands and see Olivia. At least I
know he was getting good care. They need to hire some ugly nurses though. Give a girl a break.
Wednesday, October 15, 2008
It's all about functioning
In the last 19 months since Tim's diagnosis, I have been asked many times
"how are you doing this?" I've also had many other wives and moms say to
me, "I can't even imagine....." They usually don't even finish that sentence
because the enormity of all that has transpired really is so unimaginable to them.
For a time my answer to the first question was "what choice do I have"
or "caving in is not an option, my husband and kid need me." My pastor stopped
me one time when I said the first thing. He said " No Denise, you do have a choice
and I have seen those who made the other choices, you chose to do what you have
to do for your family." I appreciated that from him and I guess I should give myself
a little credit. The fact is, as anyone who has gotten a serious diagnosis or had someone
close to them get one or has had any really tragic thing happen to them will tell you,
a huge meat
cleaver comes down and immediately seperates your life into 2 sections. The before
the event, and the after. These 2 parts of your life are totally different as if that really
needs saying. It's a whole new world and you certainly do learn a lot when something like this has happened. You rely on what you know from past hard times and then you
dig pretty deep in the well for more strength and knowledge and patience. As with anyone's
life, in good times and bad, the graph is never a straight line, up or down. You have
good days and bad days. You thank God when the good ones are winning out and you
tie a knot in the end of your rope and hold on like heck when too many of the bad ones
string together. There are times when I don't know myself how I am doing this.
I have been with Tim since I was 20 and he was 21. We are very good friends besides
being husband and wife and I just love this man more than air. I am really ticked that
this has happened to him as well as our daughter and I have felt sadness and despair
that I can't even put into words in the last year and a half. But I cannot let him down nor
my daughter by giving in to this. They need me. It is not easy to put a smile on and try
to keep things normal everyday. I often do not feel happy or normal but if the mom goes
down, the rest of the family goes with her and I can't let that happen. I also owe it to my
husband. I did not think it possible to be as brave and strong as he has been and who am
I to bring him down. He has always been the glass half full side of this marriage whereas
I am more from the "WTF!!!!!, I don't even remember getting a glass" genre. I have had to
amend that attitude for all our sakes. The reason why I am strong is very simply because you find
that you just cannot function if you are not. There have been many times I have cried myself
a river but it gets harder and harder to pick yourself up and dust yourself off.
Not that a good cry once in a while does not help but if it happens too much, you get too
far down in the dumps and it's so hard to accomplish anything and heaven knows I have a
heckuva lot that needs doing. I simply cannot function if I let that happen too often. So I
go from day to day just doing what I have to do. Being a caregiver is all about "giving more
when you feel like giving up"(stolen from a Martina McBride song.) I try to do my best.
The house is cluttered and we get take out a lot but I get the important things done and I
spend time with my guy and my kid. Doing for myself is still a real struggle but I'm working
on it. I don't understand why this has happened to us and probably am not meant to but
we are making the best of things. Tim feels and looks great. We are trying to live as "normally"
as we possibly can. I try to count my blessings and be glad that things are not worse. One never
has to look far to find folks in much worse jams, not that you want to see that but it makes you
put things in perspective. I'm looking forward to the holiday season. It's hard not to with a kid
and I'm sure she is the number one reason Tim and I have both stood up to this and carried on.
To steal another line from the same song(In My Daughter's Eyes). "She was sent to rescue me"
Having my daughter turned my life around and I think she did rescue me and I think she is
rescueing Tim too. What a blessing.
"how are you doing this?" I've also had many other wives and moms say to
me, "I can't even imagine....." They usually don't even finish that sentence
because the enormity of all that has transpired really is so unimaginable to them.
For a time my answer to the first question was "what choice do I have"
or "caving in is not an option, my husband and kid need me." My pastor stopped
me one time when I said the first thing. He said " No Denise, you do have a choice
and I have seen those who made the other choices, you chose to do what you have
to do for your family." I appreciated that from him and I guess I should give myself
a little credit. The fact is, as anyone who has gotten a serious diagnosis or had someone
close to them get one or has had any really tragic thing happen to them will tell you,
a huge meat
cleaver comes down and immediately seperates your life into 2 sections. The before
the event, and the after. These 2 parts of your life are totally different as if that really
needs saying. It's a whole new world and you certainly do learn a lot when something like this has happened. You rely on what you know from past hard times and then you
dig pretty deep in the well for more strength and knowledge and patience. As with anyone's
life, in good times and bad, the graph is never a straight line, up or down. You have
good days and bad days. You thank God when the good ones are winning out and you
tie a knot in the end of your rope and hold on like heck when too many of the bad ones
string together. There are times when I don't know myself how I am doing this.
I have been with Tim since I was 20 and he was 21. We are very good friends besides
being husband and wife and I just love this man more than air. I am really ticked that
this has happened to him as well as our daughter and I have felt sadness and despair
that I can't even put into words in the last year and a half. But I cannot let him down nor
my daughter by giving in to this. They need me. It is not easy to put a smile on and try
to keep things normal everyday. I often do not feel happy or normal but if the mom goes
down, the rest of the family goes with her and I can't let that happen. I also owe it to my
husband. I did not think it possible to be as brave and strong as he has been and who am
I to bring him down. He has always been the glass half full side of this marriage whereas
I am more from the "WTF!!!!!, I don't even remember getting a glass" genre. I have had to
amend that attitude for all our sakes. The reason why I am strong is very simply because you find
that you just cannot function if you are not. There have been many times I have cried myself
a river but it gets harder and harder to pick yourself up and dust yourself off.
Not that a good cry once in a while does not help but if it happens too much, you get too
far down in the dumps and it's so hard to accomplish anything and heaven knows I have a
heckuva lot that needs doing. I simply cannot function if I let that happen too often. So I
go from day to day just doing what I have to do. Being a caregiver is all about "giving more
when you feel like giving up"(stolen from a Martina McBride song.) I try to do my best.
The house is cluttered and we get take out a lot but I get the important things done and I
spend time with my guy and my kid. Doing for myself is still a real struggle but I'm working
on it. I don't understand why this has happened to us and probably am not meant to but
we are making the best of things. Tim feels and looks great. We are trying to live as "normally"
as we possibly can. I try to count my blessings and be glad that things are not worse. One never
has to look far to find folks in much worse jams, not that you want to see that but it makes you
put things in perspective. I'm looking forward to the holiday season. It's hard not to with a kid
and I'm sure she is the number one reason Tim and I have both stood up to this and carried on.
To steal another line from the same song(In My Daughter's Eyes). "She was sent to rescue me"
Having my daughter turned my life around and I think she did rescue me and I think she is
rescueing Tim too. What a blessing.
Thursday, October 9, 2008
The government owes me money......I sure hope they've got it
Well I have set a record for myself this year. I just e-filed my 2007 taxes today, the latest ever.
AND I found out they owe me lotsa money! We pay estimated taxes and still get creamed
every year as Tim's business has been getting bigger every year. We are very grateful for
this but man do we get slammed with taxes. So part of the reason we bought the rental
house is for write-offs and wow did that work out well. Turns out they have to send a
whole bunch of my money back to me. Now I'm just hoping our hopelessly broke government can come up with the coin. I have to say I have never been so disgusted with what is going
on in our country. Everyone is broke. The states, the federal government, the hospitals.
It's a darn mess out there. It infuriates me that our tax dollars just went to bailing out this
mess while a bunch of execs got rich giving out what to me is nothing less than predatory
loans. I think these fat cats should be sued by their stockholders and we should see them
lose their homes and all they amassed for themselves by doing this. I saw an e-mail go around
about giving the bailout money directly to the people in this country and it made sense to me
that this would be of more help than what they actually did. What a shame. My sister's neighbor
lost their home. They just moved into a rental with 3 kids and a dog. Our employee's neighbor
is in foreclosure too. It's a sad state of affairs in the good old US of A today. Very depressing.
I don't know how we will ever recover from this war and I think these financial problems will
last a long while. We need a shrewd businessman in the white house. I wish Mayor Bloomberg
were running or even better, Warren Buffett. Put 'em both in there together and they'll get
us outta this mess. Then we'll make Jimmy Buffett the head of foreign affairs. Get all them heads of state together, whip out the guitars, margaritas and reefer and everybody just chill!!!
Heck this idea can't be any worse than what the reality is. Well, here's to better days. As my
good friend who works in money management in NYC says, "Make sure you're keepin' lotsa dry powder!" That's CPA lingo for good old cash.
AND I found out they owe me lotsa money! We pay estimated taxes and still get creamed
every year as Tim's business has been getting bigger every year. We are very grateful for
this but man do we get slammed with taxes. So part of the reason we bought the rental
house is for write-offs and wow did that work out well. Turns out they have to send a
whole bunch of my money back to me. Now I'm just hoping our hopelessly broke government can come up with the coin. I have to say I have never been so disgusted with what is going
on in our country. Everyone is broke. The states, the federal government, the hospitals.
It's a darn mess out there. It infuriates me that our tax dollars just went to bailing out this
mess while a bunch of execs got rich giving out what to me is nothing less than predatory
loans. I think these fat cats should be sued by their stockholders and we should see them
lose their homes and all they amassed for themselves by doing this. I saw an e-mail go around
about giving the bailout money directly to the people in this country and it made sense to me
that this would be of more help than what they actually did. What a shame. My sister's neighbor
lost their home. They just moved into a rental with 3 kids and a dog. Our employee's neighbor
is in foreclosure too. It's a sad state of affairs in the good old US of A today. Very depressing.
I don't know how we will ever recover from this war and I think these financial problems will
last a long while. We need a shrewd businessman in the white house. I wish Mayor Bloomberg
were running or even better, Warren Buffett. Put 'em both in there together and they'll get
us outta this mess. Then we'll make Jimmy Buffett the head of foreign affairs. Get all them heads of state together, whip out the guitars, margaritas and reefer and everybody just chill!!!
Heck this idea can't be any worse than what the reality is. Well, here's to better days. As my
good friend who works in money management in NYC says, "Make sure you're keepin' lotsa dry powder!" That's CPA lingo for good old cash.
Thursday, September 25, 2008
How do you live a simple life?
Well I tried to carve out just 12 days in 3 weeks to complete the real estate licensing course
and I just barely squeaked it out. Olivia, Tim and I got sick and I missed exactly the limit
I was permitted without having to make up classes. I am exhausted. I was running Olivia
to school and driving another 20 minutes to class then the teacher luckily let us out almost
a half hour early everyday and I had just enough time to pick Olivia up so Tim would not
have to leave work and do it. I was getting an apartment ready for a new tenant, running Olivia back and forth to cheerleading practices, as well as
all my other countless duties. I remember many years ago working two jobs and still being
caught up. I have been a stay-at-homer for a long time now and am hopelessly behind. I just
cannot seem to stay on top of all my responsibilities. Tim finally blew his gasket about the
same thing the other night. He has had it. Most wood flooring guys, and many contractors, are sitting home
waiting for the phone to ring and Tim has stayed busy throughout this economic slowdown.
We are happy in one way but the lack of free time and even time to work on what he wants
to do around our own house is getting to him. I just don't know how we can simplify our life.
It bothers me that he is battling MM and not living the life he wants to live. On one hand, he
takes a lot of pride in his work and he is successful at it. I'm sure it helps to have goals and
purpose in life but when you own your own business, it is never a 9 to 5 thing. Nights are
spent on the phone or doing estimates. Before he knows it, he's kissing Olivia goodnight and did not even get to talk to her about her day. Some days I am so tempted to find some small town to move to where
we can live a simpler life. That will not happen living in Bergen County, NJ paying ridiculous
property taxes and all the other inflated NJ prices of things. Not being independently wealthy
or a lottery winner, the only way we could do this is sell everything and move to Walton's mountain. Unfortunately, our families(aka support system and emergency babysitters) are
here and I don't think I'll find any MM specialists or top of the line hospitals out in the boonies.
I feel like we are caught on the treadmill of life and can't figure out how to get off it. It's impossible for me to feel calm while living at this frantic pace. The days fly by and I feel like
we are not doing anything that we really WANT to do. Just going through the paces hardly
seems good enough to me anymore. Such a waste of precious time. If somebody figures out
the answer to this predicament, let me know.
and I just barely squeaked it out. Olivia, Tim and I got sick and I missed exactly the limit
I was permitted without having to make up classes. I am exhausted. I was running Olivia
to school and driving another 20 minutes to class then the teacher luckily let us out almost
a half hour early everyday and I had just enough time to pick Olivia up so Tim would not
have to leave work and do it. I was getting an apartment ready for a new tenant, running Olivia back and forth to cheerleading practices, as well as
all my other countless duties. I remember many years ago working two jobs and still being
caught up. I have been a stay-at-homer for a long time now and am hopelessly behind. I just
cannot seem to stay on top of all my responsibilities. Tim finally blew his gasket about the
same thing the other night. He has had it. Most wood flooring guys, and many contractors, are sitting home
waiting for the phone to ring and Tim has stayed busy throughout this economic slowdown.
We are happy in one way but the lack of free time and even time to work on what he wants
to do around our own house is getting to him. I just don't know how we can simplify our life.
It bothers me that he is battling MM and not living the life he wants to live. On one hand, he
takes a lot of pride in his work and he is successful at it. I'm sure it helps to have goals and
purpose in life but when you own your own business, it is never a 9 to 5 thing. Nights are
spent on the phone or doing estimates. Before he knows it, he's kissing Olivia goodnight and did not even get to talk to her about her day. Some days I am so tempted to find some small town to move to where
we can live a simpler life. That will not happen living in Bergen County, NJ paying ridiculous
property taxes and all the other inflated NJ prices of things. Not being independently wealthy
or a lottery winner, the only way we could do this is sell everything and move to Walton's mountain. Unfortunately, our families(aka support system and emergency babysitters) are
here and I don't think I'll find any MM specialists or top of the line hospitals out in the boonies.
I feel like we are caught on the treadmill of life and can't figure out how to get off it. It's impossible for me to feel calm while living at this frantic pace. The days fly by and I feel like
we are not doing anything that we really WANT to do. Just going through the paces hardly
seems good enough to me anymore. Such a waste of precious time. If somebody figures out
the answer to this predicament, let me know.
Wednesday, September 3, 2008
It's always something
I know that this blog shows what a roller coaster our life has become since Tim's diagnosis.
I guess life has always been that way for us due to my own medical stuff over
the years but it is certainly magnified now. One minute we're up and the next can have me
struggling very hard to avoid a nervous break-down. So only 4 days after learning
that Tim is in a remission, I take Olivia for her check-up yesterday and the nurse walks in
and tells me she has protein in her urine. I cannot even put into words what it did to me. I
was already bummed that she probably needs eyeglasses but the last time a nurse said anything
to me about protein in urine was in the ICU of a hospital 18 months ago this week while Tim was very sick with strep sepsis and we were told 2 days later he had MM. I knew this would be the
"straw that broke the camel's back" if something was wrong with Livvy. She said there was a
possibility that it was from dehydration but that was kinda extreme if she had not just been
super active. I said my daughter is a horrible drinker. She always has been and it is a problem
that we are constantly battling. Olivia is a great kid but I talk to the wall a lot with her. The constant repeating myself makes me nuts and she really lets a lot go in one ear and out the other. It's genetic, she gets it from her father. Unfortunately, they learn everything the hard
way and I am left to fix everything. It's very frustrating to say the least. So I was instructed to
force her to drink as much as she could and bring in a morning urine today on the first day of
school. I spent all night thinking this could be lymphoma, leukemia, diabetes, MM(our doc treated a 12 or 14 year old boy once). I hardly slept and cried alot. We took her to her first day
of school at her new school today and I cried all the way back to the car and to the doctors'
office. I sat in the waiting room and begged God not to do this to us. I mean, cut us some slack
OK. Mercifully, the nurse came out and said it was from dehydration and she is fine. Again,
I have no words. If that test came out positive, they would have had to literally pick me up
off the floor. Having a kid is all at once the most wonderful and the scariest thing I have ever
done in my life. These scares take years off your own life. I have had to be so strong this last
year and a half and I have felt my ability to do that weakening in the last few months. Someone
asked me how I was doing last week and I said, "well, I suppose I could still fog a mirror up
if you put it in front of my face." He laughed but I really think sometimes that would be the
best I could manage. I don't
know how Tim does it but I wish I had the mind control he does. Anyway, our prayers were
answered. Aside from needing spectacles, Olivia is healthy and happy and that is a very good
thing. My husband now understands why I have said it's a good thing I cannot tolerate alcohol.
He said this morning, "you're right, you'd be an alcoholic by now." I said it's also a good thing I
am so fearful of meds or I'd be addicted to tranqualizers too. How I am getting through this
without something is beyond me. It's a miracle, I tell ya. Well I gotta go start counting my
blessings.
I guess life has always been that way for us due to my own medical stuff over
the years but it is certainly magnified now. One minute we're up and the next can have me
struggling very hard to avoid a nervous break-down. So only 4 days after learning
that Tim is in a remission, I take Olivia for her check-up yesterday and the nurse walks in
and tells me she has protein in her urine. I cannot even put into words what it did to me. I
was already bummed that she probably needs eyeglasses but the last time a nurse said anything
to me about protein in urine was in the ICU of a hospital 18 months ago this week while Tim was very sick with strep sepsis and we were told 2 days later he had MM. I knew this would be the
"straw that broke the camel's back" if something was wrong with Livvy. She said there was a
possibility that it was from dehydration but that was kinda extreme if she had not just been
super active. I said my daughter is a horrible drinker. She always has been and it is a problem
that we are constantly battling. Olivia is a great kid but I talk to the wall a lot with her. The constant repeating myself makes me nuts and she really lets a lot go in one ear and out the other. It's genetic, she gets it from her father. Unfortunately, they learn everything the hard
way and I am left to fix everything. It's very frustrating to say the least. So I was instructed to
force her to drink as much as she could and bring in a morning urine today on the first day of
school. I spent all night thinking this could be lymphoma, leukemia, diabetes, MM(our doc treated a 12 or 14 year old boy once). I hardly slept and cried alot. We took her to her first day
of school at her new school today and I cried all the way back to the car and to the doctors'
office. I sat in the waiting room and begged God not to do this to us. I mean, cut us some slack
OK. Mercifully, the nurse came out and said it was from dehydration and she is fine. Again,
I have no words. If that test came out positive, they would have had to literally pick me up
off the floor. Having a kid is all at once the most wonderful and the scariest thing I have ever
done in my life. These scares take years off your own life. I have had to be so strong this last
year and a half and I have felt my ability to do that weakening in the last few months. Someone
asked me how I was doing last week and I said, "well, I suppose I could still fog a mirror up
if you put it in front of my face." He laughed but I really think sometimes that would be the
best I could manage. I don't
know how Tim does it but I wish I had the mind control he does. Anyway, our prayers were
answered. Aside from needing spectacles, Olivia is healthy and happy and that is a very good
thing. My husband now understands why I have said it's a good thing I cannot tolerate alcohol.
He said this morning, "you're right, you'd be an alcoholic by now." I said it's also a good thing I
am so fearful of meds or I'd be addicted to tranqualizers too. How I am getting through this
without something is beyond me. It's a miracle, I tell ya. Well I gotta go start counting my
blessings.
Saturday, August 30, 2008
The ZERO club
Yesterday was Tim's first appt. in about 2 and 1/2 months. I was trying to prepare myself
for higher numbers. His M-spike had continued to go down the first month after stopping
Velcade to a really low .06 but after almost 4 months off treatment, I just knew it was gonna
be higher. I actually felt my heart skip a beat when the assistant handed me his lab results.
I looked at the CBC first and thought, wow for Tim, these numbers are good. Then I got to
his 3 pages of lab tests and could not find the listing for m-spike. It took me several minutes
and then I finally saw the 2 sentences that said there was no monoclonal protein present in
his blood or urine. The doc was still with other patients and I was so stunned that I was
afraid to tell Tim in case this was wrong. Finally after a few minutes of checking the name
on the tops of the pages and his test results from last time, I told him. When the doc started
looking at Tim's records at his little area in the hall, I said "Am I seeing things or does Tim
have a zero M-spike?" He said "I don't know, let me see" and he found the sheets in the
huge binder of Tim's records and said. "Yes" then true to form, he tried to pee on our
parade by saying, "This actually doesn't mean that much." and I looked that big oaf straight
in the eye and said "IT DOES TO US." We walked in there 18 months ago with Tim's
IGG over 10000 and his urine protein off the charts with an insurance company that
said, "we ain't paying for treatment." Tim could have died from the strep sepsis that put him
in intensive care and led to his diagnosis. He dragged himself through a stem cell transplant
that did not do squat and the doc says, this doesn't mean much. THINK AGAIN EINSTEIN!
I repeated what I said and he shut up. It's hard not to like this man but he could be
a little more hopeful for his patients. He was gonna have Tim get a Zometa treatment even
though it was a little early for that but we needed to get the heck out of dodge and celebrate
this without anything to screw it up. I said, "it's Labor Day weekend and even though those
treatments don't bother him, why now? We'll come back for it next month." He said OK and
we peeled out of there. He said we could decide when we wanted to come back for labs and
an appt. 2 months, 3. It's up to us. I'm thinking the year 3000 sounds good. So even though
Tim feels guarded about this and I guess I do too on some level, this is a place that many
MM patients never get to and I am grateful to God for this. So I say, "Scoot over all our remission and
ZERO club pals, we're in and we're looking to stay awhile!!!!!!!!! Happy Labor Day!!!
for higher numbers. His M-spike had continued to go down the first month after stopping
Velcade to a really low .06 but after almost 4 months off treatment, I just knew it was gonna
be higher. I actually felt my heart skip a beat when the assistant handed me his lab results.
I looked at the CBC first and thought, wow for Tim, these numbers are good. Then I got to
his 3 pages of lab tests and could not find the listing for m-spike. It took me several minutes
and then I finally saw the 2 sentences that said there was no monoclonal protein present in
his blood or urine. The doc was still with other patients and I was so stunned that I was
afraid to tell Tim in case this was wrong. Finally after a few minutes of checking the name
on the tops of the pages and his test results from last time, I told him. When the doc started
looking at Tim's records at his little area in the hall, I said "Am I seeing things or does Tim
have a zero M-spike?" He said "I don't know, let me see" and he found the sheets in the
huge binder of Tim's records and said. "Yes" then true to form, he tried to pee on our
parade by saying, "This actually doesn't mean that much." and I looked that big oaf straight
in the eye and said "IT DOES TO US." We walked in there 18 months ago with Tim's
IGG over 10000 and his urine protein off the charts with an insurance company that
said, "we ain't paying for treatment." Tim could have died from the strep sepsis that put him
in intensive care and led to his diagnosis. He dragged himself through a stem cell transplant
that did not do squat and the doc says, this doesn't mean much. THINK AGAIN EINSTEIN!
I repeated what I said and he shut up. It's hard not to like this man but he could be
a little more hopeful for his patients. He was gonna have Tim get a Zometa treatment even
though it was a little early for that but we needed to get the heck out of dodge and celebrate
this without anything to screw it up. I said, "it's Labor Day weekend and even though those
treatments don't bother him, why now? We'll come back for it next month." He said OK and
we peeled out of there. He said we could decide when we wanted to come back for labs and
an appt. 2 months, 3. It's up to us. I'm thinking the year 3000 sounds good. So even though
Tim feels guarded about this and I guess I do too on some level, this is a place that many
MM patients never get to and I am grateful to God for this. So I say, "Scoot over all our remission and
ZERO club pals, we're in and we're looking to stay awhile!!!!!!!!! Happy Labor Day!!!
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