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.