Drug stories

So a funny thing happened and a first for Tim's wood flooring business. We had a woman call
and ask Tim if he or his employee stole 3 vicadin out of her kitchen cabinet while they
were re-finishing her floors. To us, this is funny. You see Tim has a kitchen cabinet full of
painkillers, tranquilizers and heaven knows what all left over from his stem cell transplant and our employee has Crohn's disease, has had 2 surgeries on his gut ,and has his own cabinet full of stuff. His mom has MS so between our 2 households, we could keep the whole damn town
higher than a kite if we wanted to and certainly have no need to steal a few vicadins. Tim assured her that it was not them. We found out later from her brother that his brother-in-law had
recently been found to have a drinking problem and apparently booze wasn't his only vice and
he saw the day they were having work done on their house as a ideal chance to steal his wife's
new pain pills she got after oral surgery whilst throwing someone else under the bus for it. Kinda sad. By the way, if you have any Ativan around, I just found out a few weeks ago, it is the best
medicine for a hangover. We had a X-mas party a few weeks ago. Afterward, we went over to
our neighbors' whose party went even later than ours. Tim is not used to drinking that much
anymore and didn't think he had that much beer but when your party starts at 5p.m. and you
don't end till about 2 or 2:30 a.m., you can put down a few brews. He was so miserable the next morning. I was surprised. I checked his eyes before I left the neighbors' at 12:30 and he looked
fine. Tim was born cross-eyed. His eyes were operated on to straighten them but he has one
that is slightly weaker than the other and when he drinks, it tends to float in. I know he's buzzed
when I see that or really tired. When they both float in(this is rare), he's toast and it's time to cut him off! So he had this terrible headache and he was super nauseous. I said, "what the heck, let's try something from the
old cabinet." So I gave him 2 tylenol and 1 ativan and it was "good night nurse!" The boy was
out cold for 5 1/2 hours and when he woke up, it was dark again and he didn't know what hit him but he felt MUCH better. So the last funny drug story happened just awhile back at a
football game Olivia was cheerleading at. The mom of another cheerleader has some medical
problems and we talk shop a bit. She has lung issues and tells me that she wound up with some
fungal pneumonia thingy and I said, "you mean aspergillosis?" and she said "Yeah, that was it!"
Aspergillosis is something that used to be fatal and MM'ers and those going through transplant
can be at risk. It is also something you can get from smoking pot which is often contaminated with the fungus. This woman is 49, has a 19 year old and 11 year old twins. So kidding around
I said to her, "better stay away from pot," and she turned to me and said "WHAT?!!" I knew
she was too hip to be offended so I was surprised when she stopped watching the game and
looked at me so seriously. Well, it turned out she had smoked pot at a party. Hadn't done it
in many years and someone offered and she figured "what the heck." I laughed. I had been just
fooling around and it turns out she never knew this, why would she, but I guess I'm glad I
brought it up cause she has enough medical problems to deal with and could have gotten this
again and never known the cause. Ya just never know who parties hard. I am such a tea-totaller
compaired to most. I used to think I was pretty hip. My husband assures me I am SO not.
I guess I'm getting old.

What a year!

Well, I'm getting back on some solid ground it seems. My mammogram situation is finally
resolved, I think. I had 2 radiologists who disagreed on whether I needed further testing
or not so I went straight to a breast surgeon with all my mammos and he said, "I think you're
OK but let's do a sonagram." I was scared. We went to the hospital at 9 am with a snow storm
barelling down on us and I was convinced the technician saw something. She came back in and said it was normal.
I teared up. It's been a heck of a year. Thankfully, Tim has done wonderfully this year but
I have had a time of it and the trials of owning our 2-family house really put a damper on
things. I feel for my parents. Tim is like a son to them and his illness really hits them hard and of course I've had my problems. I have one sister getting a divorce. My youngest one just had her
mammogram flagged too and needs more testing and my older sister, who works part time
in the hospital I was in yesterday morning wound up in its ER at the same time with a gallbladder attack and
as a final HOO-RAH to a hard year, she offered up her gallbladder as a sacrifice to the "new
year Gods" last night. I told her that as much as I didn't want to see her go through this, I was glad it was her gallbladder and not my boob that had to be sacrificed. She felt the same way.
The girl's a trooper.
So even though I am behind with X-mas stuff, I am trying to squeeze out some joy now that
some hard times are behind us. Our new tenant moved in and so far, he seems nice. Hopefully,
we will have some smooth sailing on that front now. I will be glad to see 2008 end. All in all, it
has been really tough for so many people. The economy is going to "you know where" in a
hand basket and I wish this war could be ended. We really need this whole country to get
back on solid ground. I hope 2009 sees a lot of improvement in that respect.
Happy holidays to you and yours and best wishes for a blessed 2009.

Too many monkeys on my back

Well I guess if I didn't complain, I wouldn't be left with much to say. The fact is that
I just have too many bad things hitting me from all angles and I am sick, sick, SICK
of it all. It turns out my mammo situation is still not settled and my tenant is not
paying her rent. I had 2 deals fall through with new tenants and now finally have
a deal that looks like it will work(if a moving van shows up on the 15th, I guess it's
a go). I am still so behind around the house and just this week paid a very heavy
price(literally) for that. Tim called me a little after 5 pm the other day and had
just been pulled over in a police trap. It seems I misplaced the registration for his
work truck and it was 3 days past the expiration date. Tim got 2 tickets. Unfortunately,
the one ticket involved weighing the truck and you get charged by your weight for being
over the registered amount(which is 0 when you are unregistered). The 2 tickets together
will cost $1284.00. Merry X-mas from the NJ county police dept. Yippee! I went upstairs to
my room and just cried. I am so mad at myself. Here is my husband working and doing things
he should not be doing in his condition and I can't even hold up my end of the deal. Then we have
our tenant who apparantly thinks there's nothing wrong with jetting off to Disneyworld
while letting us support her and her kids. I am trying to find my grateful side. It's not that
we don't have the money, it's the principal of the thing. Many people who live in this area
and don't like it feel that there really are many more jerks living in this metropolitan area
and that it is different when you move out of it. I always wonder if it's true. I suspect it is
but Tim always tells me there are #%&*@#!'s everywhere you go and since I seem to be
a magnet for them, I guess they'd find me no matter where I went. I try so hard to change
my outlook but when things keep happening one after the other, one does get a bit disgusted.
BUT TIM HAS NO M-SPIKE and I am gonna keep reminding myself of that over and over.
And SANTA'S coming for crying out loud!! It's time to be happy. It's just so hard to soar like
an eagle when you're surrounded by turkeys.
Dear Santa, SEND PROZAC

Answered prayers and false alarms

Well, it looks like I won't be trading in the old girls for anything "bigger and better."
A new doctor and a few more pix and it turns out the boobs are alright. When I called
to make the follow up to re-scan and ultrasound "lefty," they told me the next appt.
for that was Jan 2nd. I said, "you've gotta be kidding if you think I'm sitting on this
for that long." Welcome to NJ, the land of "too many freekin people." I called a few more
places and initially was squeezed in for Friday(no pun intended) and the lady called me right back and said,
"can you make it for noon today?" Of course I jumped at the chance to end this nightmare.
The doctor said that he didn't think my scans were any reason for concern in the first place.
Can you believe that? They re-scanned with the mammo but cancelled the sonagram and
said I definitely did not need and MRI. Someone was being a little too proactive due to a
sister's DCIS of a few years ago. Of course I'm happy but also a little ticked that we went through this at all.
I feel so bad that I took my family along for my mental breakdown but I am not real good
at keeping things to myself. I need to purge it outta me. I have spoken to several people on the myeloma listserv that have the situation
of the man having MM and the woman having breast cancer. One couple had both diagnosis
given on the same day. I knew that I could have just as easily been one of them. I am more
than a little irritated with my doctor and he has just been fired. He never called me even
after I left a message to do so and if he had ever bothered to pick up the phone, he probably
would have been able to give me a better idea of what the real deal was and save me a whole
lot of heartache and stress. Time to find a practice where I won't be just a number and they
don't give test results the way I received these. Back to the old "normal." I also got a call
back from the woman who said she wanted the apt. and she is taking it after all so several
good things going on to turn the tide of things around here. I am more than a little grateful
to have this turn out OK. I have had several times in my life when I had close calls like this
with very bad possible diagnosis and I was not sure if this was when I was not gonna dodge
it. Tomorrow's another day. Just soldiering on through here.

Some good news

We just got back from Tim's appt. and Zometa treatment. I walked in with a bad headache
and came out feeling great. He is still at zero and his numbers look better than ever. His
hemoglobin and white counts are just a hair below normal. This is the best his counts have
been especially since the hosp. snafu that had him shortchanged bigtime of stem cells during
his transplant. He had to eventually make his own and it took a long time for his blood counts
to recover. His labs look fan-freekin-tastic. I am so happy for him. The doc said that this means
a heckuva lot now that he is maintaining this. It is obviously his own immune system that is
keeping the lid on the MM as he has not had a chemo treatment since May 9th(Livvy's b-day)
obviously a blessed date for us! I am so happy he can go into the holiday season with this
great news. Last year was far different. Now I just gotta get through my appointments and
pray all goes well and hopefully things will simmer down a little. Man I wish my life could go
back to being boring. I didn't know how good I had it.

I don't know what to call this post

Well, I've said it before. My life is a roller coaster. I just found out last night from a recorded
message(more on that later) that a spot of "higher density" was found in my left breast on
my mammogram. I don't know what to say. I have to go for a sonagram and MRI now and
FEAR is overtaking me. I got on the phone and called my sisters, mom and mother-in-law.
This news was a toxin I just had to get out of me. How could this be happening to us? WHY?!
I actually skipped having a mammo last year as the new place I had to go to did not have the
digital machines up and running yet. Instead of calling back after the holidays, I put it off as
Tim had to go back on chemo and I had had a mammo just 1 or 2 years before and another
a few years before that in '02. I have been feeling some soreness in that breast as well as
some pelvic and low back pain so I had the sonagram to check all that out and scheduled the
mammogram on the same day. To say I just can't cut a break just doesn't even describe the
things that have happened to me in my life. I don't even have the energy to explain. Everyone
tells me "don't go there" when I say that it would be just my luck that it's cancer but how do
you not "go there"? God cannot be this cruel, can he? I have had nightmares ever since Tim
was diagnosed that I got diagnosed with some kind of cancer too so the fact that this is happening now is just my worst nightmare. I have had so much loss of sleep in the last 2 weeks.
I know I have sleep apnea and was going to go get tested and start taking better care of myself.
I have felt like hammered "you know what" the last few months. Waking up exhausted is not
helping me. I don't know who all reads this blog. As I have said in the past, I have only
told a very few people I know about it. It really is just my way of venting and I guess I am
feelng desperate enough that instead of not posting about this until I even know if there is a
problem, I am doing the opposite hoping that any prayers sent up on my family's behalf even by total strangers will help. To get back to how I found this out, my doctor's office has a new system
to inform people of test results. Get this. You get a laminated card with a box and pin number
on it. You get a recorded phone call when your test results are in. You call a toll free number
and enter your numbers to hear a recorded message from your doctor. I thought, well this means if he did not call me directly, it must be all OK cause a doctor can't possibly break bad
news to people like that right?! Wrong, even a doctor who knows you well and knows your
husband has cancer and delivered your 10 year old daughter apparently thinks this is a fine
method. AND the call came at 8 p.m. on a Saturday night when no one is working and I cannot
even ask him any questions concerning the results. How's that for the benefits of modern
technology?! Inexcusable is just one of the many words that come to mind. The other phrases
contain to many expletives to print. I am in shock. Tim just did an estimate 2 weeks ago for
people in a town just a few minutes from here where 3 kids are being raised by a nanny. Their
father died and 2 years later their mother died too. Where is the justice in that? This cannot
happen to my daughter. Please God, it just wouldn't be fair. I am in such
shock right now and so exhausted that I am stunned this post even makes sense. I have to
go show the apt. again today and I just don't care anymore. What a huge headache that place
has been. The new people that were supposed to rent it had the worst reference I ever got
and I had to tell them forget it. They are devastated and I was ticked. I am a magnet for liars.
The driveway contractor we used tried to screw us and I caught the whole deal and told him
to write up a new contract with the warranty he promised or I won't pay the balance. Now, he
is treatening to sue me and has added late fees to my bill. My blood pressure has been so high,
I was planning to go to the doc and will probably have to start meds which scares me so much.
If anybody reads this, I hope you'll send a little shout out to the "Big Guy" on our behalf. I
just don't know what else to say at this point.

Making history and myeloma good news

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.

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.

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.

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.

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.

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.

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!!!

All's well that ends well

We just got in last night from Vermont. It's a good thing we went. The weather ended up
being great and I never would have heard the end of it if we did not go based on my idea
to skip it. Things actually went well with the in-laws. We had a good time. Olivia worked
at the dairy farm across the street every afternoon with the girls that live there. Their dad told
me he wants to hire her. She has no problem getting in there with the manure hoe and
mucking out stalls. She fed chickens and calves and picked veggies. She loves it and did not
want to come home. I golfed for the first time in 9 years. Luckily, I got some exercise doing
it and the views from this course are incredible because my score card was shameful. It
looked more like olympic gymnastic scores than golf scores. Tim and I got some real time
together canoeing at the lake, golfing and hanging out with some friends up there. I guess I
don't even realize how little time we spend without Livvy around us. This week, Tim will have
his labs drawn and next week he will have his first doctor appt. in over 2 months. As always,
I am nervous but it is what it is and I can't change anything so we'll hope for the best. He still
has some neuropathy in his legs and feet and I still hope that it goes away. It's a constant
reminder for him and makes me sad to see him in pain. People are always so shocked to see
him looking so well. We saw friends we haven't seen since May '07, and I guess everyone
just automatically thinks if you have cancer, you're gonna look it. He is tan and fit and looking
fine which is great for him. Not bad for me either, I might add. Well back to reality, as if I ever
left. I have so much to do, I hardly know where to start. I need a personal assistant big time!

Recipe for disaster

Well we were off to Vermont, then cancelled the trip and now we're off again. What a pickle.
The weather up there has been rain and more rain. We were gonna stay at my sister's place
but it was gonna be tight as my niece and other brother-in-law are there too and my sis has 2 very large, hairy(this is starting to sound gross) DOGS that would be wet, muddy and all over us
the whole time. One just rolled in a dead porcupine and spent half a day under anesthesia being
de-quilled. Yesterday my newest tenant just informed me he is moving to California for
a job and I am stuck with re-renting an apt. I just rented a few months ago. This darn rental
has been a royal pain. So Tim was not able to get any of his jobs to move into this week and I
will have to start showing the apartment next week. I could see Tim was not gonna get anything done on our house or the rental as he was moping about missing this trip so I said, the heck with it, let's go. His brother's family is leaving there tomorrow which makes enough room for us at his parent's house but this is probably the last thing I
need. I have been so tired and short-fused lately and putting me in a house full of in-laws
whilst looking out at the rain and having nothing to do with a kid who'll be bored is definitely
a bad mix. I have a really large bottle of Zinfandel around here somewhere that is going in with
the luggage and this week may be the week I start drinking. I'm bringing plenty of books but what I'll really need is earplugs and a muzzle. Hear no evil, speak no evil. Ah vacation. Dontcha
just love it?! There's gotta be a better way.

Birthday bloggin'

So today is the 15th anniversary of my 28th birthday. Everybody, including me, is playing the
lottery thinking that 8-8-08 must be some kinda lucky charm. I don't really believe in any
superstitions or what-not but since it is my birthday, I figured if I was ever gonna win, why not
today? Still trying to retire Tim. We just got back from 9 days at the Jersey shore. Tim, as usual,
did not want to come back. The man could live at the beach and Olivia is right there with him on
that. Me, I'm glad to be home and sleeping in my own bed though not for long. Tim decided to
take another week off so I'm doing the laundry marathon and re-packing and we'll
be off to Vermont for a week. OY!!! This girl has been packing and moving since two weeks ago.
We split our vaca between 2 different shore points and now it will be a 350 mile drive to VT.
I'm always wondering when MY vacation starts. I'm whooped. The whole in-law family is
up in Vermont at Tim's parents' house and the good news is.....we are staying at my sister's
house 20 minutes away!!! Like my other sister always says "Of all my husband's family, I like myself the best!" That sister, incidently, was born on my fourth b-day. So happy birthday to her too!!!
I am starting to see that vacation is actually harder for me than being home. As many wives
and moms know, it can be much more work and in my case, I am always so overwhelmingly
busy at home and I didn't realize how much it staved off all those sad and scary thoughts. There is
way too much time to think when you are not on the run constantly. But it's also hard to relax when
you have left behind a ton of things that need doing. I need to learn how to relax. I have decided to start an exercise program
when we get back and I hope I can do it. I need to start taking time for me and I've had 8 pounds creep on in the last 3 years and I'm not happy with them. I'm determined to get my
"six-pack" back and wear a bikini again. Well, I think I'm determined. We'll see.

Caregiver burnout

Well I think I am there. I believe I am suffering from an acute case of caregiver burnout.
I just spent 65 clams on caregiver self-help books on Barnes and Noble.com. Since my run-in
with the rudest therapist this side of the Mississippi, I decided I might read my way to better
emotional health. I am an avid reader and pending finding a new and improved
shrink, I realize I need help now. I vent a lot to my mom and sisters but it is a heavy load I carry
and I'm sure it's difficult for them to hear at times. My poor sister called me tonight to ask
about her babysitting Olivia so Tim and I can go see BRUCE on Monday and I had just woken
up from sleeping through dinner. I walked upstairs after another tough day of being beaten down and taken for granted and said "I quit, make your own dinner" and told Tim to take
Olivia to vacation bible school himself. I told my sister all that was bothering me and I know
that my family is very worried about me. I don't even recognize this worn out woman in the mirror that looks back at me. My health is starting to suffer. I am finally sleeping now that
I am not kept up with a sick dog and still I am exhausted during the day. I have been warned
by many folks, including my pastor and the social worker we saw before Tim's transplant
that many times the caregivers do not do well. I have even been told 2 0r 3 times "we bury
caregivers all the time." THANKS for that. Some people really need to censor themselves.
It's truly incredible what comes out of peoples' mouthes sometimes. But I am sure it is true.
I feel like I am drawing from an empty well everyday trying to come up with the strength
to keep going, catch up with everything and keep all these balls in the air. This girl is tired
and frustrated and depressed and fed up. I joined a book club and went to the first meeting
last week. Would you believe after all my threats lately that I am moving to a deserted island,
that is what this month's book was about. The woman self destructs and takes off for Jamaica and swims, drinks a little beer, smokes a little homegrown and tries to find out who she is and what
is important to her now. SOUNDS LIKE A PLAN TO ME!!! I realize that I have been a caregiver all my life. I was the mother hen
in my family and the shrink to all my friends. I have always been the one to call when you need
a hand. Unfortunately, this was not reciprocated when I wound up with a life-changing health problem. I guess when you are a caregiver type, you attract those who need that. Takers will
always gravitate to givers. Makes perfect sense, doesn't it? I wound up taking care of a family friend last week who had a blood clot in his leg. He
is a widower and I took him to the hospital, took care of his dogs, was his advocate, picked up his meds and gave him
his shots when he got home till he started doing them himself. I was happy to do it though because he is a giver and would do anything for anyone. It actually took my mind off my own problems for awhile too. It does feel good to do for others. It heals you in a way to be a help but there are limits. It's no wonder I look the way I do.
I never do a darn thing for myself. It's got to change. I am going to be no good to anyone if this
goes on. When we got together with the folks Tim had his transplant with, I heard him say something that stopped me. Both Tim and Jim push their MM out of their minds as much as
possible so they can live their lives as normally as possible. Jim's wife and myself are the
researchers. Tim said,"Denise has lived this more than I have." What he meant by that is that
it has been on my mind more and I have immersed myself in it. I do not believe for a second that
my situation is harder than Tim's. Even when I hear patients say that they think it's harder on
their spouse, I think that's nice to give a caregiver credit but I would never go that far. But I do
realize I need a break. I don't know if I can stop myself from learning how to help Tim but I have to start taking mini vacations from it or I'm gonna really hit bottom. In the last 16+ months, I
have both felt stronger than I have ever felt in my life and weaker. I revved myself up for his
transplant to muscle everyone through it. I was like superwoman and I was so knowledgeable
about the whole deal that all the nurses thought I was a nurse. A few docs did too. But all this stress is catching up to me now. Luckily, after all
that has happened, my husband feels and looks incredible now. Everyone tells him and
me that(one more person just 2 hours ago). I on the other hand, look like I've been clobbered with chemo or something. The ladies are crazy about Tim's curly hair and Mr. Sexpot is gonna dump me for a hot blonde if I don't shape up!
Just a little "heads up" to you girls out there, he is HIGH MAINTENANCE. So it's time to spend
a little time on me now. First stop, a massage at my old friend's place. She sent me a coupon for
a free massage for 2 and we have never gone. Tim won't commit so I'm going my darn self. It's
high time to fill the well back up. I don't think Jamaica's in the cards but maybe I should wear
one of those dreadlock caps down to Cape May next month and pretend! YA MON!

Hypochondria

A friend of mine who had her children young and long before I had my daughter once said to me,
"If you ever were afraid to die, wait till you have kids, you'll be petrified of it." My thoughts on that are "Thanks for sharing." But I never forgot she said it and she was right. It made a big impact on me especially coming from her. She was raised in a very religious household where
her father was even a deacon of their "born again Christian" church. She had a firm belief that
you died when your number was up and she seemed at ease with it even mocking me whenever
I put my seatbelt on when we were riding in her 1974 Volkswagon bug. She used to tell me with
a laugh, "that's just one more thing they'll have to pull off your charred body if we crash in this thing." My apologies to any bug owners. Anyway, when Tim was diagnosed with MM, I began to
have nightmares that I was also diagnosed with cancer and noticed a bit of a spike in an already
present but mild hypochondria. I guess this is pretty common especially when you have a young child and not any real good option for anyone else in the family to raise her. So last night as Tim and I are going to bed, I notice a pain in my groin and it turns out I seem to have a swollen lymph node there. I broke out into a sweat immediately. I went back downstairs as I felt on the verge of losing it and did not want to do that in front of Tim. Ya see, he was always the healthy one and having him get sick freeked me out in many ways but I always felt that if I checked out,
he'd do a pretty good job of raising Olivia. He is a great dad. I never thought he would get sick. After all the research I have done on MM, which is considered like a lymphoma as well as
all the people I have met and some who were just diagnosed with it, that was my first thought
when I felt this painful lump last night. I have not been a very lucky person when it comes to health problems. Though I always follow that with, many have had things much worse. But when
you feel like you've had nothing but bad luck, you think you are so vulnerable to anything. I am trying to keep myself calm about this. I have a lot of bug bites and a cut up toe from a stubbing
a few days ago. I have had a lymph node in my chin blow up on several occasions from having
skin breakouts in that area. Of course I went on the internet this morning and it is common to have lymph nodes blow up from any kind of infection or wound and one site even metioned a
stubbed toe but Hodgkins disease also came up when searching swollen lymph node. Do I give it
a day to see if it goes down or run righ to the doctor? I hate going to doctors. I could go on all day
about the major medical screwups that have happened to me all caused by doctors. The visions
that ran through my head last night were unspeakable. So scary. When I was 27, I thought I had
gall stones and a doctor told me after a sonagram, "you have a swollen pancreas and it could be cancer." The diagnostic test for this is a bit like an endoscopy but they search for a little hole in your stomach that they shoot die into to take x-rays of your pancreas and gall bladder. I darn
near bought it having the test as I had a bad allergic reaction to the demerol they used to "try" to put me out. The doctor then used just versad and I woke up several time during the procedure as they were shoving a tube down my throat. Not one of my better days. He wound up having a hard time doing
the test. I don't think he could find the hole to shoot the die and it was somewhat inconclusive.
I woke up to. "Well, we don't think it's cancer, come back in three months for another cat scan
and we'll see then." Translated, if you're alive in 3 months, that's a good sign. This is just one time out of several that I was told I might have a life-threatening disease and was then told,
probably not. I know the fear of this both not having a child and having one. It freezes the blood in your veins either way. So today, I do the hypochondria dance with myself all day. With the
exception of some real fatigue problems which I've had forever, and this stupid lymph node,
I have no other symptoms of lymphoma. I think I will give it a day and put some antibiotic ointment on all my cuts and bites and see what tomorrow brings. As always, my prayers go out
every night to anyone who has had a cancer or other serious diagnosis. And I sure hope that this
turns out to be nothing. We are full up with tragedy around here.

The great thing about people with cancer

It always happens that just when I'm about to give up on mankind, something or someone comes along to restore my faith. Yesterday we got together with the folks Tim went through his stem cell transplant with. Two of the couples are in their early to mid sixties and the other gal is a year or so older than Tim,45 or 46. She brought her boyfriend. The two couples live in PA and so
we meet halfway at a chili's out route 80. I am a pretty chatty person and we all did the transplants outpatient and stayed in the same condo complex together so a bond was formed and although I hate what brought us together with these fine folks, I am glad to have them as
friends now. We all e-mail each other and have kept in touch and spending an afternoon with
them yesterday soothed my soul after the really tough week we have had. I had a long un-diagnosed health problem for many years that sincerely affected the quality of my
life. It taught me at a young age what is important in life. Most people my age then and even now have not learned that lesson. I also live in a somewhat affluent area. Though we are firmly ensconsed in the middle class, we live around some very wealthy people. Though I don't like to
generalize, the fact is a lot of people around here are obsessed with money and appearances and
a lot of things that hold no real value to me. I've many times thought of moving but I don't want to move from our families. Our daughter is an only child who is fortunate to have a realtionship
with all 4 grandparents ( I did not have that) and I can't take her away from that. My husband's
business is built on his reputation and moving would have us starting from scratch. Now that Tim has MM, moving is not an option. Although we could find a place with an MM specialist,
you can't give up your support system when dealing with MM especially when you have a young child to look after. We also go out with another couple whom I met through the support group at
Tim's doc's office. Same age as us. It's not that we spend all our time with these folks talking about cancer. We do compare notes and information and share laughs about things too but it is
so different hanging out with people who have their priorities straight and are way past the
"keep up with the Joneses" garbage. The warmth and support is priceless. I actually teared
up when we got there yesterday and I saw everyone with their new curly hair and all looking healthy and
smiling. It was just what I needed to start to wash away the awfulness of the past week. So I
have to say, people who have cancer are evolved way past some of the immaturity that I just don't have the stomach for anymore. I have met some incredible human beings since we started on this journey 16 months ago. You have to take your blessings where you find them.

Isn't a therapist supposed to LOWER your stress?

At the risk of sounding like such a complainer these days, I have to tell the story of my week.
It really is almost comical if it weren't so sad. Since I really haven't even given this blog address
to more than a few people I actually know, I won't be offending anyone. Well I hope not anyway. Well we lost Sophie and that is the worst part of this past week. It was and is devastating and there's not much more that needs to be said about that. One of my daughter's best friends (and our good friend's daughter) has
been really betraying Olivia lately and out of jealousy and a competitive nature on her part has decided to try to turn a group of girls against our daughter. I felt it was going too far and spoke
to her mother as diplomatically as I possibly could. I thought we could handle this like two adults. Turns out I was the only adult involved. With a smile on and the sweetest of voices,
she did what I guess most people who cannot accept responsibility for something they or their kid did, she did the classic "deny it ever happened" in the form of "my daughter would never do that!" Sidebar here: she has had this problem with her daughter in her school before, and the second most common defense mechanism, pass the blame onto someone else thereby deflecting
attention off her kid. Somehow this is Olivia's fault and maybe she is not as mature as her daughter. I can't even find the strength to type long enough to tell you how backwards she has
that except to say that her daughter is obsessed with public potty talk and a parent at our softball game actually pulled me aside to ask if she had a mental problem or tourrettes. I am torn between ignoring all this or sticking up for my daughter and telling her how disappointed I am that she would go to such lengths as to blame someone else for her kid's behavior. God people are so immature sometimes. It's called REALITY people, it happens whether you can deal with it or not!!! What makes this worse is she sat her kid down and told her this theory not only giving her an excuse for her mean behavior but this kid now has one more thing to whisper to the "brat pack" about Olivia and her MOM told her this so it must be true.
Unbelievable. So I do what I thought about doing a year ago. I make an appt. with a therapist.
Tim is sooooo busy at work that we have to turn cartwheels to make this happen and I had a noon appt today. Tim and I both have miserable colds and woke up so exhausted. I felt guilty that he had to drag himself to the job early so I could make my appt. He is not great with time and often is late. He calls me shortly before the appt. and tells me he might not make it. GREAT.
I get my kid ready and tell him to pick her up in the waiting room of the office I am going to. He
totally rushes and gets home in time and off I go. I am tired, sick, in physical pain from a whole other situation and the counselor totally blows off the first 15 minutes of my appt. by staying longer with her last appt. not even coming out to say she'd be with me shortly. Now this is not like going to the regular doctors' office. You get a time and they are on time. They do not run over with people but today she did on my first visit. I was furious. Then I get into her office and
she is worried about her next appt. which she will be late for. She apologized and realized I was ticked and I thought, "how is talking to this rude woman going to help me?" She realized this
without me saying it and asked if this has negatively affected our session today. YA THINK?!!! I said " ya know, I should have been in therapy a year ago but I have had NO time to worry about me. I finally made this appt. My husband has cancer(she knew this) and he's sick and he just made himself crazy trying to get home in time to watch our kid. I am sick and tired and in pain and you are 15 minutes late!!! Was that a life threatening situation that you just had in here because I am trying to be understanding here?" We spoke for a few minutes and I realized she would spend the last 20 minutes of MY appt. watching the clock as she ticked off her next clent.
I said, "This is a waste of my time and you are rude" and I walked out. This was the cherry on the cake of my week. Ya know things are tough when even your therapist pisses you off!!! Just another day in the life. Time to find a new shrink.

A post for Sophie

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.

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?!!!

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.

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?!

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.

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!!!

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!!!

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.

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.

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!!!

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.

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.