Last week was a tough one and this one is destined to be tougher. Our beloved dog
is failing terribly and it looks like she may not be around another week. I feel guilty
even saying that, like I'm betraying her or something, but we had her to a specialist
in Yonkers last week and she is diagnosed with megaesophagus(causes constant vomiting)
and her back legs are losing function either to degenerative myelopathy(doctor calls
it Lou Gehrig's for dogs) or a serious disc problem that would require major surgery.
She is close to 13 and her quality of life is not good anymore. Tim is carrying all 65 pounds
of her up and down flights of stairs which he should not be doing and I have been doing it
also. (The small set of stairs and just down. I'm not nearly as macho as Tim.) As always,
the hardest thing is going to be seeing our daughter suffer. She is an animal lover and
has never been without this dog. We will not get a puppy as it is time to start travelling to
all the places we've wanted to go. I also feel pretty guilty that Tim and Olivia are going through
this pain. It was my idea to get a dog. Tim was totally against it as his dog died in his arms and
he never wanted to go through that again. I was not working and lonely and Tim was working so much that I told him it was
either a dog or a boyfriend. He told me to get a boyfriend. But she has had a good life. I hate to
see her suffer and it's just her time. We will be devastated and adding this to some of the other
really stressful things that are going on in our life, we have been ready to move to a deserted island. I think it's time to go hit some poor therapist's couch and unload some of this misery.
My mom and sister could sure use a break I'm sure. This girl can VENT I'll tell ya. I don't know
if it will help but it might be worth the co-pay if I can just sleep on the couch for 45 minutes uninterrupted! Do they even use couches? If I can't nap, forget the whole thing! Anyway,
just gonna take things a day at a time and try to keep Olivia really busy. Sophie is a great
doggie and a very loving "sister" to Livvy. She will be missed.
Sunday, July 6, 2008
Tuesday, June 17, 2008
Catch that pigeon!
Today was Tim's first appt. since going off Velcade. I was a bit nervous. I tried to brace myself and him for a rise in numbers and said it's OK as long as it levels off at some point. Last month,
he went off chemo based mostly on a second(actually our third) opinion. Tim's doc felt it was still
working and would have kept going but the neuropathy had started and I did not want it getting worse and the last month
on it his M-spike went from .23 to .21 and Igg which is already below normal just down a few more points. It looked a lot like a plateau to me. Anyhow, imagine my surprise when I look at
his lab reports and see his M-spike to be 0.06 and Igg even further down. I had to check the patient's name just to be
sure I got the right paperwork. I did not see that coming but damn near broke out into another
happy dance. Dang was I happy. So for the first time in a looooonnnngggg time, he can go two months before doing the old pee-in-a-jug, pump out blood and doctor's appt. routine. So anyway,
we met a couple we've seen and gabbed with several times before as well as a guy who is in a
complete remission and is 45 and has a 12 year old daughter. Many times, we wind up having
a little support group right there in the waiting room. It passes the time and we meet the nicest
people. Anyway this guy is from the Philippines. Out of 11 siblings, only one was a match, his
eldest sister who is 65. They have been fighting with immigration for 3 years to allow her to
come over and donate cells and now it's approved and he is in CR and has been since last year.
He doesn't know what to do but he tells us a story about someone he knows in the Philippines who has MM and neither the money nor the place to get modern treatment for it. He said Philippinos use natural medicines and believe in a lot of different things healing wise and they
swear that pigeons have the antibodies to fight MM and so this guy is going to these specialty stores in North Bergen and Paterson,
NJ and buying and eating pigeon meat. Medically,
it sounded like the docs don't know why he went into a CR and supposedly this guy in the Philippines
is doing well too. I said "does it taste like chicken?!" He said no. He said it's quite gamey and
expensive and you need beer to get it down(a spoonful of sugar and all that.) But I'm thinking
maybe it's time to break out my old pistol and pop me a few pigeons and frickazee them little
suckers in some garlic and wine sauce. Well it's a thought. Tim vetoed it immediately. I've heard
crazier things but that's for another post. Time to cook dinner. No pigeon tonight but who knows
what might be in the meatloaf next week?!!!
he went off chemo based mostly on a second(actually our third) opinion. Tim's doc felt it was still
working and would have kept going but the neuropathy had started and I did not want it getting worse and the last month
on it his M-spike went from .23 to .21 and Igg which is already below normal just down a few more points. It looked a lot like a plateau to me. Anyhow, imagine my surprise when I look at
his lab reports and see his M-spike to be 0.06 and Igg even further down. I had to check the patient's name just to be
sure I got the right paperwork. I did not see that coming but damn near broke out into another
happy dance. Dang was I happy. So for the first time in a looooonnnngggg time, he can go two months before doing the old pee-in-a-jug, pump out blood and doctor's appt. routine. So anyway,
we met a couple we've seen and gabbed with several times before as well as a guy who is in a
complete remission and is 45 and has a 12 year old daughter. Many times, we wind up having
a little support group right there in the waiting room. It passes the time and we meet the nicest
people. Anyway this guy is from the Philippines. Out of 11 siblings, only one was a match, his
eldest sister who is 65. They have been fighting with immigration for 3 years to allow her to
come over and donate cells and now it's approved and he is in CR and has been since last year.
He doesn't know what to do but he tells us a story about someone he knows in the Philippines who has MM and neither the money nor the place to get modern treatment for it. He said Philippinos use natural medicines and believe in a lot of different things healing wise and they
swear that pigeons have the antibodies to fight MM and so this guy is going to these specialty stores in North Bergen and Paterson,
NJ and buying and eating pigeon meat. Medically,
it sounded like the docs don't know why he went into a CR and supposedly this guy in the Philippines
is doing well too. I said "does it taste like chicken?!" He said no. He said it's quite gamey and
expensive and you need beer to get it down(a spoonful of sugar and all that.) But I'm thinking
maybe it's time to break out my old pistol and pop me a few pigeons and frickazee them little
suckers in some garlic and wine sauce. Well it's a thought. Tim vetoed it immediately. I've heard
crazier things but that's for another post. Time to cook dinner. No pigeon tonight but who knows
what might be in the meatloaf next week?!!!
Wednesday, June 4, 2008
Caution: parent shamelessly bragging about kid
As I think I have said in a former post, I try very hard to find things to be grateful for to try to
save my sanity(not sure that's working) and keep the old blues at bay. Today I must brag about
our kid. She is about to graduate the 4th grade and go on to an upper elementary school. It seems like not long ago at all that we were walking to her first day of kindergarten at this school.
It goes by so fast. Today, Olivia was chosen to be a special guest in the speech class to give the
speech students a chance to show what they learn there. The speech teacher came up to me
after school and told me she was a joy and she so loved having her there. This is the second time this year that teacher has complemented Olivia on her behavior with other kids and told me how much she likes her.
At her teacher conferences, they always tell us that Olivia is well-liked and a big help to other
kids. Her teacher this year actually told us that it amazes her that a 9 year old(10 now) and an only child at that is so caring and lacking the self centeredness that most kids that age
and only children especially have. She told us how ALL the boys in the 4th grade treat her like she is their sister as they are so comfortable with her(not always a good thing.) My sister told me after taking care of her for the bulk of
the 2 weeks we were gone for Tim's transplant that she loved being with her and playing mom.
She has no kids. She told me that Tim and I have definitely done something right with her. Not to get too morbid but she and her husband are childless by choice and she is the executor of our
wills and in charge of appointing someone to raise Olivia if something should happen to us. I never thought they would be interested and they told me that they don't care who we prefer, they're taking her! She is a cool kid. She is smart and was chosen this year to get a proclamation
from our mayor as one of the top 3 readers in her school. This girls just knocks us out. Thinking
back on all the times teachers in this school have complimented her just makes us bubble over
with pride. Being smart and good in sports is nice and all but raising a good person is so important to me. Today, and everyday, I thank God for blessing us with this easy-going,
adventurous, compassionate, smart, fun-loving and unbelievably cool little girl. There have
not been many times in my life that I have felt "lucky" but getting this kid was a like hitting
the lottery.
save my sanity(not sure that's working) and keep the old blues at bay. Today I must brag about
our kid. She is about to graduate the 4th grade and go on to an upper elementary school. It seems like not long ago at all that we were walking to her first day of kindergarten at this school.
It goes by so fast. Today, Olivia was chosen to be a special guest in the speech class to give the
speech students a chance to show what they learn there. The speech teacher came up to me
after school and told me she was a joy and she so loved having her there. This is the second time this year that teacher has complemented Olivia on her behavior with other kids and told me how much she likes her.
At her teacher conferences, they always tell us that Olivia is well-liked and a big help to other
kids. Her teacher this year actually told us that it amazes her that a 9 year old(10 now) and an only child at that is so caring and lacking the self centeredness that most kids that age
and only children especially have. She told us how ALL the boys in the 4th grade treat her like she is their sister as they are so comfortable with her(not always a good thing.) My sister told me after taking care of her for the bulk of
the 2 weeks we were gone for Tim's transplant that she loved being with her and playing mom.
She has no kids. She told me that Tim and I have definitely done something right with her. Not to get too morbid but she and her husband are childless by choice and she is the executor of our
wills and in charge of appointing someone to raise Olivia if something should happen to us. I never thought they would be interested and they told me that they don't care who we prefer, they're taking her! She is a cool kid. She is smart and was chosen this year to get a proclamation
from our mayor as one of the top 3 readers in her school. This girls just knocks us out. Thinking
back on all the times teachers in this school have complimented her just makes us bubble over
with pride. Being smart and good in sports is nice and all but raising a good person is so important to me. Today, and everyday, I thank God for blessing us with this easy-going,
adventurous, compassionate, smart, fun-loving and unbelievably cool little girl. There have
not been many times in my life that I have felt "lucky" but getting this kid was a like hitting
the lottery.
Thursday, May 15, 2008
Life on the roller coaster
I did not want my last, very negative post to be hanging out there too long so just a quick update. We have felt for a long time that we are on a roller coaster and it continues to be
that way but some days end on a very good note and that brings forth a lot of gratefulness
and picks you up out of those dark spots. We had Olivia's birthday party yesterday at
a Build A Bear place in the mall and this was a good thing. The girls had a ball and everything
went super EXCEPT in the middle of the party, I get a call on my cell phone that there is water
leaking through the living room ceiling in the apartment in the rental house we own. It's always
something. I thought after three months of working on the upstairs apt. and renting it that
we could coast for awhile. Not to be. We got phone calls within 2 weeks about the new tenant
when he showed up with an ear-splitting Harley we were not told about and woke up the other
tenants and half the neighbors starting it up at 6 AM. That got ironed out and then we had another problem with him. Obviously, he did not know he was dealing with a stressed out,
sleep deprived, hormonal, desperate housewife. He does now. I told him that if he thinks he's gonna add more grief to my life, he is mistaken. He either shapes up or I'm tossing him out.
He chose to shape up.
Then the downstairs tenants have parents
who live out of the country who are ill and they are moving back home to care for them. Another
apartment to rent. So luckily this roller coaster has its ups. The apt. rented immediately and I
believe we will like this situation better anyway. I am learning to try to "roll with the punches"
more and more with all these problems the last few months have thrown our way. They say you learn the most in the bad times of your life. I just wish God didn't think I had so much learning that had to be done. But the best
news lately was the telephone consult we had with a top myeloma specialist last night that has
us feeling more hopeful and confident than we have felt in a long time. Tim has made up his mind
not to have an allo transplant now. We intend to stop the Velcade now that it's done its job and
the neuropathy has begun anyway so the timing is right to end it and we will pray that he will
be able to ride out a nice remission from the great response he had from it. We have been tied
up in knots ever since we learned his sister was a match and we both feel like a weight has been
lifted off of us now. I think that Tim really felt in his gut that he wanted to at least try to see if
he could get a remission and have some quality time before doing something that is still so
controversial. I have always had the utmost respect for anyone brave enough to do the allo
and still do. He may even do one at a later time if it becomes necessary but for now, he feels OK
trying to use meds because he responded so well to them so far and this doctor had that very
same opinion when he looked at Tim's history and lab reports. I am grateful for the many "ups"
we have had in these last few months. They have gotten us through the really rough spots. Our life has been like being in a boat and getting tossed about. I intend to just keep on paddling
one day at a time. I guess this wasn't such a "quick update". I can ramble with the best of them,
can't I?!
that way but some days end on a very good note and that brings forth a lot of gratefulness
and picks you up out of those dark spots. We had Olivia's birthday party yesterday at
a Build A Bear place in the mall and this was a good thing. The girls had a ball and everything
went super EXCEPT in the middle of the party, I get a call on my cell phone that there is water
leaking through the living room ceiling in the apartment in the rental house we own. It's always
something. I thought after three months of working on the upstairs apt. and renting it that
we could coast for awhile. Not to be. We got phone calls within 2 weeks about the new tenant
when he showed up with an ear-splitting Harley we were not told about and woke up the other
tenants and half the neighbors starting it up at 6 AM. That got ironed out and then we had another problem with him. Obviously, he did not know he was dealing with a stressed out,
sleep deprived, hormonal, desperate housewife. He does now. I told him that if he thinks he's gonna add more grief to my life, he is mistaken. He either shapes up or I'm tossing him out.
He chose to shape up.
Then the downstairs tenants have parents
who live out of the country who are ill and they are moving back home to care for them. Another
apartment to rent. So luckily this roller coaster has its ups. The apt. rented immediately and I
believe we will like this situation better anyway. I am learning to try to "roll with the punches"
more and more with all these problems the last few months have thrown our way. They say you learn the most in the bad times of your life. I just wish God didn't think I had so much learning that had to be done. But the best
news lately was the telephone consult we had with a top myeloma specialist last night that has
us feeling more hopeful and confident than we have felt in a long time. Tim has made up his mind
not to have an allo transplant now. We intend to stop the Velcade now that it's done its job and
the neuropathy has begun anyway so the timing is right to end it and we will pray that he will
be able to ride out a nice remission from the great response he had from it. We have been tied
up in knots ever since we learned his sister was a match and we both feel like a weight has been
lifted off of us now. I think that Tim really felt in his gut that he wanted to at least try to see if
he could get a remission and have some quality time before doing something that is still so
controversial. I have always had the utmost respect for anyone brave enough to do the allo
and still do. He may even do one at a later time if it becomes necessary but for now, he feels OK
trying to use meds because he responded so well to them so far and this doctor had that very
same opinion when he looked at Tim's history and lab reports. I am grateful for the many "ups"
we have had in these last few months. They have gotten us through the really rough spots. Our life has been like being in a boat and getting tossed about. I intend to just keep on paddling
one day at a time. I guess this wasn't such a "quick update". I can ramble with the best of them,
can't I?!
Tuesday, May 13, 2008
Warning:major vent alert!!!
Well I mentioned in one of my blogs how we've had a real streak of bad luck these last few months and I had hoped that streak was on its way out quite some time ago but, alas, it is
still going strong!!! Since about the 2nd week of February, it has been one thing after
another. Luckily, most of this has not related to Tim's health but it has been extremely
stressful anyway. I have always had a low tolerance for people who are selfish,
obnoxious and inconsiderate but being faced with what we have been faced with these
last 14 months, my tolerance for BS really is non-existant. The phrase, "you find out who your friends are" is very true and I was not surprised by that but it goes even further than that.
You realize that some people just have no conscience at all and the levels some people will stoop
to just stuns me sometimes and I guess I didn't think I could be surprised by that anymore. I have realized too that having toxic people in your life is not a good idea and drags you down. I can usually take quite a lot and I certainly do not look for trouble but after all the
stress and sleep loss, my fuse has shortened considerably. My neighbor found this out the hard
way. Since moving in 4 and 1/2 years ago, he has woken us up countless times early in the morning on weekends renovating his house. Very loud power tools outside at 7 AM on Sunday mornings
doesn't fly in our neighborhood where the houses are so close together. Several neighbors have
been mad about this but no one said anything. Cut to a few months ago when he was still doing
this after Tim's transplant and he began loading a dumpster at the crack of dawn one Sunday,
waking us all up, and I let him have it. I must have looked like a crazy woman. I threw clothes on
but must have been a sight. I lit into him so bad, his face turned white. Before you think that I
am a crazy woman, this man had also said some inappropriate things in the past so he had it coming and he was not someone I want to be chummy with anyhow. He apoligized profusely
and is civil to us but his wife is ticked and that's fine. I just don't want jerks in my life anymore.
We just had someone do something so incredibly low to us concerning Tim's business and the
anger that I have probably has my blood pressure soaring. The way some people will stop at nothing for a buck is sickening to me. I have to keep telling myself that what goes around comes
around and that I am glad that Tim and I are known to be honest and trustworthy people,
but I gotta be honest, all these people who screw everyone in their path are healthy and my husband, who would do anything for anyone(and does) is sick. Hardly seems fair. I know it is
certainly not my place to decide how anybody's life turns out but the injustice of things sometimes is really hard to swallow. Very depressing at times. Well to try to end this on a good
note, we have also seen some real caring come from people and when that happens, it renews
your faith in mankind. We have to increase our time with the kind of people we want to be around and try to limit our exposure to the others. It's definitely a quality of life decision.
still going strong!!! Since about the 2nd week of February, it has been one thing after
another. Luckily, most of this has not related to Tim's health but it has been extremely
stressful anyway. I have always had a low tolerance for people who are selfish,
obnoxious and inconsiderate but being faced with what we have been faced with these
last 14 months, my tolerance for BS really is non-existant. The phrase, "you find out who your friends are" is very true and I was not surprised by that but it goes even further than that.
You realize that some people just have no conscience at all and the levels some people will stoop
to just stuns me sometimes and I guess I didn't think I could be surprised by that anymore. I have realized too that having toxic people in your life is not a good idea and drags you down. I can usually take quite a lot and I certainly do not look for trouble but after all the
stress and sleep loss, my fuse has shortened considerably. My neighbor found this out the hard
way. Since moving in 4 and 1/2 years ago, he has woken us up countless times early in the morning on weekends renovating his house. Very loud power tools outside at 7 AM on Sunday mornings
doesn't fly in our neighborhood where the houses are so close together. Several neighbors have
been mad about this but no one said anything. Cut to a few months ago when he was still doing
this after Tim's transplant and he began loading a dumpster at the crack of dawn one Sunday,
waking us all up, and I let him have it. I must have looked like a crazy woman. I threw clothes on
but must have been a sight. I lit into him so bad, his face turned white. Before you think that I
am a crazy woman, this man had also said some inappropriate things in the past so he had it coming and he was not someone I want to be chummy with anyhow. He apoligized profusely
and is civil to us but his wife is ticked and that's fine. I just don't want jerks in my life anymore.
We just had someone do something so incredibly low to us concerning Tim's business and the
anger that I have probably has my blood pressure soaring. The way some people will stop at nothing for a buck is sickening to me. I have to keep telling myself that what goes around comes
around and that I am glad that Tim and I are known to be honest and trustworthy people,
but I gotta be honest, all these people who screw everyone in their path are healthy and my husband, who would do anything for anyone(and does) is sick. Hardly seems fair. I know it is
certainly not my place to decide how anybody's life turns out but the injustice of things sometimes is really hard to swallow. Very depressing at times. Well to try to end this on a good
note, we have also seen some real caring come from people and when that happens, it renews
your faith in mankind. We have to increase our time with the kind of people we want to be around and try to limit our exposure to the others. It's definitely a quality of life decision.
Friday, April 25, 2008
Paradise found
Well we just got in today from sunny florida and it did live up to its name, the sunshine state.
We had terrific weather the whole 12 days and I can honestly say this is the first real "R and R"
we have had since Tim's diagnosis. We have not been away from home for that length of time
since our wedding/honeymoon and a long vaca like that really helps you to leave
your "to do" list behind. Disney was magical and it was terrific to spend some time in the Keys
with relatives. Perfect setting, great company, real "lower your blood pressure" type stuff.
Only downfalls: Olivia looks like she has the measles as she is just covered with bug bites and I
came down with a cold for the Key Largo leg of the trip that Tim may be getting now. I'm grateful that is all. The flights were fine. I can't say I like to fly and I definitely get sweaty palms
especially during take-off but I did really well and Olivia loved it and wants to fly everywhere now. Unfortunately we have to get back to reality now. Tim has to decide about an allo transplant
and his doctor is now urging him to consider a full allo. Everytime we think we have a plan,
we get another option/suggestion thrown at us and it leaves us even more confused and over-
whelmed. This myeloma business is just one big gray area and it really stinks. It's hard to make
any kind of educated decision because the field is constantly changing and the results are not
necessarily all in on the modern treatments of this disease. I feel that the protocol Tim has already been through will be changed very soon(or already has been) and I'm frustrated with the feelings
of "wishing I knew then what I know now" as far as his induction therapy and
auto transplant goes. Can't go back. Oh well. Back to the world of errands, housework and
doctor's appts. Rats!!!
We had terrific weather the whole 12 days and I can honestly say this is the first real "R and R"
we have had since Tim's diagnosis. We have not been away from home for that length of time
since our wedding/honeymoon and a long vaca like that really helps you to leave
your "to do" list behind. Disney was magical and it was terrific to spend some time in the Keys
with relatives. Perfect setting, great company, real "lower your blood pressure" type stuff.
Only downfalls: Olivia looks like she has the measles as she is just covered with bug bites and I
came down with a cold for the Key Largo leg of the trip that Tim may be getting now. I'm grateful that is all. The flights were fine. I can't say I like to fly and I definitely get sweaty palms
especially during take-off but I did really well and Olivia loved it and wants to fly everywhere now. Unfortunately we have to get back to reality now. Tim has to decide about an allo transplant
and his doctor is now urging him to consider a full allo. Everytime we think we have a plan,
we get another option/suggestion thrown at us and it leaves us even more confused and over-
whelmed. This myeloma business is just one big gray area and it really stinks. It's hard to make
any kind of educated decision because the field is constantly changing and the results are not
necessarily all in on the modern treatments of this disease. I feel that the protocol Tim has already been through will be changed very soon(or already has been) and I'm frustrated with the feelings
of "wishing I knew then what I know now" as far as his induction therapy and
auto transplant goes. Can't go back. Oh well. Back to the world of errands, housework and
doctor's appts. Rats!!!
Tuesday, April 1, 2008
Happy April fool's day
Today marks five years since Tim quit his "day job" and became officially self-employed.
I think it is a good luck day for us. We just got the results of his second round of Vel/Dex
and his numbers are so good that if I was not so tired, I would have danced in the doctor's
office again. His M-spike is .43 and the doc actually feels this is a high estimate when his
other counts are taken into consideration. His IGG is 700. We were gonna go to Disney for
a week after this month's treatments but Tim wanted to extend it to 2 weeks so we can go to
the Florida Keys and visit his Aunt and Uncle and the doc told us to do whatever we want.
He said his numbers are so low and he responded so well that he is not worried if we mess
around with his chemo schedule to go on vacation. Yippee!! Time to blow this place for sunny
skies. I have not flown though since 1985 so this should be a hoot. I swore off the friendly
skies after a rough take-off going to LA and never flew again. We drove last time we went to
Disney but we are too darn tired to do that now. Tim will be on a Dex crash when we leave,
unless his Doc will let us nix or decrease the dex that one time so he is not so tired and I just
don't sleep well and am exhausted all the time. We lose so many days by driving, I just decided
to deal with my anxiety and fly. So if any of y'all are flying to Florida this month and see a
guy in a mask next to a woman doing yoga chanting, THAT'S US!!! My daughter will be the
brave one next to us. Tim is looking forward to some umbrella drinks at Jimmy Buffet's place.
Can't wait!!!
I think it is a good luck day for us. We just got the results of his second round of Vel/Dex
and his numbers are so good that if I was not so tired, I would have danced in the doctor's
office again. His M-spike is .43 and the doc actually feels this is a high estimate when his
other counts are taken into consideration. His IGG is 700. We were gonna go to Disney for
a week after this month's treatments but Tim wanted to extend it to 2 weeks so we can go to
the Florida Keys and visit his Aunt and Uncle and the doc told us to do whatever we want.
He said his numbers are so low and he responded so well that he is not worried if we mess
around with his chemo schedule to go on vacation. Yippee!! Time to blow this place for sunny
skies. I have not flown though since 1985 so this should be a hoot. I swore off the friendly
skies after a rough take-off going to LA and never flew again. We drove last time we went to
Disney but we are too darn tired to do that now. Tim will be on a Dex crash when we leave,
unless his Doc will let us nix or decrease the dex that one time so he is not so tired and I just
don't sleep well and am exhausted all the time. We lose so many days by driving, I just decided
to deal with my anxiety and fly. So if any of y'all are flying to Florida this month and see a
guy in a mask next to a woman doing yoga chanting, THAT'S US!!! My daughter will be the
brave one next to us. Tim is looking forward to some umbrella drinks at Jimmy Buffet's place.
Can't wait!!!
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