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!!!
Tuesday, April 1, 2008
Thursday, March 20, 2008
The downfalls of an acoustical bathroom
I always hated Easter as a kid. Sounds strange but for years, we always seemed to come
down with the stomach virus every year at Easter and I came to dread the holiday because of
it. I've gotten over it though some of those memories remain. True to the Easter theme, Tim has decided to
"resurrect" this tradition. Last night as I tapped away on my computer, he came home from doing
estimates, ran in the back door and and up the stairs, into the bathroom and the distinct sounds
of Easters passed echoed throughout our house. When we remodeled our house, it never dawned
on me that making a big bathroom and covering it with tile and marble would essentially make
it so acoustical that the echo could be heard from all corners of the house. Even the exhaust fan,
which sounds to me like the engines of a DC-10, don't drowned out a bad stomach virus. Our daughter had to sleep in the livingroom and I spent half the night wondering how hard it would
be to sound-proof that darn bathroom. It was a tough night for Tim. I gave him an Ativan and
then a compazine when it seemed the Ativan probably did not stay down long enough. I don't
think either helped much and since he had pulled his Dex all-nighter the previous night, he
was wiped out to say the least. I have been waging chemical warfare all over the house with
anti-bacterial wipes and I hope like heck that Olivia and I do not come down with this. It was
downright violent. If this Easter tradition starts again, I think we will seriously look into the
Jewish faith.
down with the stomach virus every year at Easter and I came to dread the holiday because of
it. I've gotten over it though some of those memories remain. True to the Easter theme, Tim has decided to
"resurrect" this tradition. Last night as I tapped away on my computer, he came home from doing
estimates, ran in the back door and and up the stairs, into the bathroom and the distinct sounds
of Easters passed echoed throughout our house. When we remodeled our house, it never dawned
on me that making a big bathroom and covering it with tile and marble would essentially make
it so acoustical that the echo could be heard from all corners of the house. Even the exhaust fan,
which sounds to me like the engines of a DC-10, don't drowned out a bad stomach virus. Our daughter had to sleep in the livingroom and I spent half the night wondering how hard it would
be to sound-proof that darn bathroom. It was a tough night for Tim. I gave him an Ativan and
then a compazine when it seemed the Ativan probably did not stay down long enough. I don't
think either helped much and since he had pulled his Dex all-nighter the previous night, he
was wiped out to say the least. I have been waging chemical warfare all over the house with
anti-bacterial wipes and I hope like heck that Olivia and I do not come down with this. It was
downright violent. If this Easter tradition starts again, I think we will seriously look into the
Jewish faith.
Tuesday, March 11, 2008
A report from the "chain gang"
Well I have to say first that this last month or so has been one big series of unfortunate events
around our house. I don't even have the time to get into every blasted thing that has gone
wrong but they just kept on coming without end for awhile. I kept telling Tim(and myself)
that who cares if the darn sky falls in as long as his numbers went down from the 1st round
of Velcade, that's all we need. A little aside here. We went out to dinner on Sat. night to not
really celebrate a year since he was diagnosed but I don't know how else to describe it. The sky
actually almost fell in. We had a wicked wind storm come up(heard there was a little twister
about a half hour from here) and a huge light from a gas station fell and hit my car and crashed to the ground. I'm hoping this was the last event. It's just been unbelievable all that has gone wrong. Anyway, today Tim got his results and his numbers look great. His IGG chains are in
normal range for the first time since before diagnosis and all his light chains, the Kappas and
the Lambdas all got on board and did the same thing. For any folks not hip on MM lingo,
basically the fraternity of normal Kappa Lambda ratio is the one you want to get in and Tim's in!!! I will say the hazing process of this fraternity should be outlawed. Melphalan,
Velcade, Dex. Nasty business. But I can really let go of all the cr-- that has happened as long
as this one thing went right. At first I was gonna spare his doctor from witnessing my little
version of the happy dance when I saw Tim's lab report but decided, screw that, he'll get over it, and so I busted into a little "cabbage patch" right there in the hall on the way to the chemo room. Sometimes, you just gotta dance. Anyway, that's the update. We are so relieved that it
is working so well. Hope all y'all out there have something to be thankful for today.
My song of the day today: James Talylor(who else) -The Secret of Life. Very simple but
a good message.
around our house. I don't even have the time to get into every blasted thing that has gone
wrong but they just kept on coming without end for awhile. I kept telling Tim(and myself)
that who cares if the darn sky falls in as long as his numbers went down from the 1st round
of Velcade, that's all we need. A little aside here. We went out to dinner on Sat. night to not
really celebrate a year since he was diagnosed but I don't know how else to describe it. The sky
actually almost fell in. We had a wicked wind storm come up(heard there was a little twister
about a half hour from here) and a huge light from a gas station fell and hit my car and crashed to the ground. I'm hoping this was the last event. It's just been unbelievable all that has gone wrong. Anyway, today Tim got his results and his numbers look great. His IGG chains are in
normal range for the first time since before diagnosis and all his light chains, the Kappas and
the Lambdas all got on board and did the same thing. For any folks not hip on MM lingo,
basically the fraternity of normal Kappa Lambda ratio is the one you want to get in and Tim's in!!! I will say the hazing process of this fraternity should be outlawed. Melphalan,
Velcade, Dex. Nasty business. But I can really let go of all the cr-- that has happened as long
as this one thing went right. At first I was gonna spare his doctor from witnessing my little
version of the happy dance when I saw Tim's lab report but decided, screw that, he'll get over it, and so I busted into a little "cabbage patch" right there in the hall on the way to the chemo room. Sometimes, you just gotta dance. Anyway, that's the update. We are so relieved that it
is working so well. Hope all y'all out there have something to be thankful for today.
My song of the day today: James Talylor(who else) -The Secret of Life. Very simple but
a good message.
Tuesday, February 19, 2008
Velcade Day
Today Tim gets his first Velcade treatment. His numbers, which had been pretty stable since
his SCT, have now started to move. No big jump, but they are going up. We knew this would
happen eventually but I must admit that his being off chemo these last months has made our life
as close to "normal" as it's been since this all began. I am not looking forward to all the time we
will now have to spend in his doc's office. He needs a CBC and has to see the doc. everytime he
has this infusion and his doc. is always behind schedule. I still feel guilty complaining because of course this is much worse for Tim, but I guess I do have the right. I just hope it works. Tim has decided he will probably do the mini-allo and his doc. once again told us that he may not even be a candidate for one if they can't get his numbers low enough.
If the velcade does not work, we are really in a pickle. On a non-cancer note, we are nearly done
w/the apartment renovations. The kitchen cabinets went in on Sat. and I showed the apartment
3 times and all parties were interested. There is very little undeveloped property in our little
suburban town in Bergen County, NJ but this 2-family we bought overlooks a 3 acre nature
preserve with a river winding through it and the young couple who we chose is in love with the
place. The guy can't wait to pull a trout out of the creek. I know they stock it but I secretly thought to myself that he may catch nothing more than a plastic bag. Tim, Olivia and I did watch 2 red-tailed hawks there just a few days ago though. Not a common
sight in these parts. I am relieved to be almost done and to have it rent so fast. It's a load off
my extremely overloaded mind. Tim's flooring business is very busy. We thought he'd be a little
slow in Jan. and Feb. as is the norm but he is swamped and that makes it very stressful for him
to be trying to finish the apt. on top of all his business responsibilities. I wish we could hit the lottery. I hate the stress and time constraints he has. If ever there was a time you did not want
your life to be governed by financial matters and health insurance, it is when you are faced with
an illness and you really want to spend all your time showing the world to your 9 year-old. There
was this show on TV about how winning the lottery ruined these people's lives. Boy, I am convinced we could make a good run of it if we were given the chance!!! Oh well, back to reality.
And right now that reality is a sink full of dishes and a doctors appointment. RATS!!!
his SCT, have now started to move. No big jump, but they are going up. We knew this would
happen eventually but I must admit that his being off chemo these last months has made our life
as close to "normal" as it's been since this all began. I am not looking forward to all the time we
will now have to spend in his doc's office. He needs a CBC and has to see the doc. everytime he
has this infusion and his doc. is always behind schedule. I still feel guilty complaining because of course this is much worse for Tim, but I guess I do have the right. I just hope it works. Tim has decided he will probably do the mini-allo and his doc. once again told us that he may not even be a candidate for one if they can't get his numbers low enough.
If the velcade does not work, we are really in a pickle. On a non-cancer note, we are nearly done
w/the apartment renovations. The kitchen cabinets went in on Sat. and I showed the apartment
3 times and all parties were interested. There is very little undeveloped property in our little
suburban town in Bergen County, NJ but this 2-family we bought overlooks a 3 acre nature
preserve with a river winding through it and the young couple who we chose is in love with the
place. The guy can't wait to pull a trout out of the creek. I know they stock it but I secretly thought to myself that he may catch nothing more than a plastic bag. Tim, Olivia and I did watch 2 red-tailed hawks there just a few days ago though. Not a common
sight in these parts. I am relieved to be almost done and to have it rent so fast. It's a load off
my extremely overloaded mind. Tim's flooring business is very busy. We thought he'd be a little
slow in Jan. and Feb. as is the norm but he is swamped and that makes it very stressful for him
to be trying to finish the apt. on top of all his business responsibilities. I wish we could hit the lottery. I hate the stress and time constraints he has. If ever there was a time you did not want
your life to be governed by financial matters and health insurance, it is when you are faced with
an illness and you really want to spend all your time showing the world to your 9 year-old. There
was this show on TV about how winning the lottery ruined these people's lives. Boy, I am convinced we could make a good run of it if we were given the chance!!! Oh well, back to reality.
And right now that reality is a sink full of dishes and a doctors appointment. RATS!!!
Monday, February 4, 2008
Tim's birthday
Superbowl Sunday fell on Tim's 44th birthday this year. We had a nice day. Took our
daughter and her friends bowling and went to our friends' superbowl party. It's hard to
believe how much has changed since his b-day last year. We took our parents to a Toby Keith
concert. It was our daughter's first concert and Tim's dad's first(at age 70). No worries. Just
good times. I suddenly remembered something that did happen last year that I realize was
because of his then undiagnosed MM. His lips were chapped and his bottom lip split. The next
morning his lip was blown up like the guy who plays Bubba in "Forrest Gump". We were all
joking him about it and calling him names. It was all funny at the time but I now know this
was because he was really sick and had low white blood cells. It made me so sad to think
we were mocking him so bad and he was so sick and we didn't know it. We just got word last
week that a guy we know lost his battle with colon cancer. He was only 45 and has 3 kids,
the youngest being just 4 or 5. I didn't want to tell Tim but I myself hate to be patronized
and I knew he'd find out from someone else and figure out that I'd kept it from him so I
told him. It's impossible not to think about the what "ifs" when faced with this kind of reality.
When cancer touches your life, you feel like it's all you see or hear about. I am always hearing
of someone being diagnosed, dying, battling it and the worst stories are the little kids. When I
could give to charity, I always gave to St. Jude to help save those kids and kids everywhere.
Tim thinks he is going to do the mini-allo transplant. We are very scared but with the auto
not working, the docs feel this is really the best thing to do. They feel the failed SCT is not a
good sign. He will probably start Velcade in about 2 weeks and get his numbers down as low
as they'll go and then onto the mini-allo. I pray things go well. This is an excruciating decision
but I guess we are kinda more afraid not to do it when the docs talk to us about his case.
For now we are very busy renovating the apt. and running his business. I wish we had less
stress in our life but we just gotta get through all this. We hope to sneak in a quick trip to
Disneyworld before the real tough stuff starts. We'll see.
daughter and her friends bowling and went to our friends' superbowl party. It's hard to
believe how much has changed since his b-day last year. We took our parents to a Toby Keith
concert. It was our daughter's first concert and Tim's dad's first(at age 70). No worries. Just
good times. I suddenly remembered something that did happen last year that I realize was
because of his then undiagnosed MM. His lips were chapped and his bottom lip split. The next
morning his lip was blown up like the guy who plays Bubba in "Forrest Gump". We were all
joking him about it and calling him names. It was all funny at the time but I now know this
was because he was really sick and had low white blood cells. It made me so sad to think
we were mocking him so bad and he was so sick and we didn't know it. We just got word last
week that a guy we know lost his battle with colon cancer. He was only 45 and has 3 kids,
the youngest being just 4 or 5. I didn't want to tell Tim but I myself hate to be patronized
and I knew he'd find out from someone else and figure out that I'd kept it from him so I
told him. It's impossible not to think about the what "ifs" when faced with this kind of reality.
When cancer touches your life, you feel like it's all you see or hear about. I am always hearing
of someone being diagnosed, dying, battling it and the worst stories are the little kids. When I
could give to charity, I always gave to St. Jude to help save those kids and kids everywhere.
Tim thinks he is going to do the mini-allo transplant. We are very scared but with the auto
not working, the docs feel this is really the best thing to do. They feel the failed SCT is not a
good sign. He will probably start Velcade in about 2 weeks and get his numbers down as low
as they'll go and then onto the mini-allo. I pray things go well. This is an excruciating decision
but I guess we are kinda more afraid not to do it when the docs talk to us about his case.
For now we are very busy renovating the apt. and running his business. I wish we had less
stress in our life but we just gotta get through all this. We hope to sneak in a quick trip to
Disneyworld before the real tough stuff starts. We'll see.
Friday, January 4, 2008
Happy New Year
Well it's 2008 and I am hoping that it is a far sight better than 2007 was for us. Tim and I
both have bad colds that are hanging on. This is actually the first illness Tim has had since
March when he had the strep sepsis that led to his dx. Surprisingly, his last cbc was actually
great despite being sick. His white cells came up to normal levels by themselves and the
doctor has decided that a bone marrow biopsy can wait. I think we are going to have to start
keeping a low profile now as illnesses seem to be everywhere. The holidays were not as bad as
I thought they'd be after all. When you are so busy cooking and shopping and running between
both sides of our family, you don't have a lot of time to think. Of course having a nine-year-old
helps keep the magic alive too. I am finding it hard to "plan" our life. Tim's friends just invited
him to fly to one of the Carolinas for a golf trip in March and we don't know what to say. We just
have no idea if he will be back on chemo, prepairing for a mini-allo or what. We also wanted to
go back to Disney World in April with our best friends and it is so much more fun for Olivia to
go with them and their girls as she has someone to go on the rides with. We just can't plan ahead. Very frustrating. The phrase "life is what happens when you're making other plans"
is something that popped into my head a lot in these last 10 months. That is sure what happened to us last year. Ten days before Tim was rushed to the ER, we closed on a 2-family
house that we bought as an investment for the future. Since Tim is self-employed, he has no
401K so this was our answer to that. I sure wasn't expecting what happened. Certainly wasn't
part of the "plan". We spent over a month doing renovations when the owners moved out and
Tim was all looped out on Rev and high dose Dex. The other tenant just moved now so we will
spend this month re-doing that apt. I guess in some ways, being so busy and having so much
work on our hands keeps our minds occupied giving us less time to worry about old MM but
I would love to know what it feels like to be "caught up" with everything and be able to RELAX.
both have bad colds that are hanging on. This is actually the first illness Tim has had since
March when he had the strep sepsis that led to his dx. Surprisingly, his last cbc was actually
great despite being sick. His white cells came up to normal levels by themselves and the
doctor has decided that a bone marrow biopsy can wait. I think we are going to have to start
keeping a low profile now as illnesses seem to be everywhere. The holidays were not as bad as
I thought they'd be after all. When you are so busy cooking and shopping and running between
both sides of our family, you don't have a lot of time to think. Of course having a nine-year-old
helps keep the magic alive too. I am finding it hard to "plan" our life. Tim's friends just invited
him to fly to one of the Carolinas for a golf trip in March and we don't know what to say. We just
have no idea if he will be back on chemo, prepairing for a mini-allo or what. We also wanted to
go back to Disney World in April with our best friends and it is so much more fun for Olivia to
go with them and their girls as she has someone to go on the rides with. We just can't plan ahead. Very frustrating. The phrase "life is what happens when you're making other plans"
is something that popped into my head a lot in these last 10 months. That is sure what happened to us last year. Ten days before Tim was rushed to the ER, we closed on a 2-family
house that we bought as an investment for the future. Since Tim is self-employed, he has no
401K so this was our answer to that. I sure wasn't expecting what happened. Certainly wasn't
part of the "plan". We spent over a month doing renovations when the owners moved out and
Tim was all looped out on Rev and high dose Dex. The other tenant just moved now so we will
spend this month re-doing that apt. I guess in some ways, being so busy and having so much
work on our hands keeps our minds occupied giving us less time to worry about old MM but
I would love to know what it feels like to be "caught up" with everything and be able to RELAX.
Sunday, December 16, 2007
The holidays
The holidays are pretty rough this year. It's hard not to think of last year and other
years when it was all joy without the dark cloud of cancer hanging over our heads.
Had a drs. appt. Friday. The doc wants to do another bone marrow biopsy. Tim's
M-spike and proteins are staying stable since his SCT but his red and white blood cells
are not recovering like they should. He feels terrific and none of us has had even a
cold. This is some sort of divine intervention, I'm sure, because we have never had a
school year come this far without our daughter and myself becoming sick at least once
by now. Depending on how the BMB comes out, they may give him another bag of his
stem cells to see if that will help him produce more blood cells. They say it's a good sign
that his platelets are in normal range and staying there but of course I worry when the
doctors are puzzled and things aren't going as they should. Hopefully the fact that he
feels so good is also indicative that this is nothing too serious. Anyway, I wish all of you
and your families a joyful holiday season. I hope 2008 holds blessings for all of us.
years when it was all joy without the dark cloud of cancer hanging over our heads.
Had a drs. appt. Friday. The doc wants to do another bone marrow biopsy. Tim's
M-spike and proteins are staying stable since his SCT but his red and white blood cells
are not recovering like they should. He feels terrific and none of us has had even a
cold. This is some sort of divine intervention, I'm sure, because we have never had a
school year come this far without our daughter and myself becoming sick at least once
by now. Depending on how the BMB comes out, they may give him another bag of his
stem cells to see if that will help him produce more blood cells. They say it's a good sign
that his platelets are in normal range and staying there but of course I worry when the
doctors are puzzled and things aren't going as they should. Hopefully the fact that he
feels so good is also indicative that this is nothing too serious. Anyway, I wish all of you
and your families a joyful holiday season. I hope 2008 holds blessings for all of us.
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