timswifesblog

Curse of the snowblower

2009-12-20T14:44:00.000-08:00

If there is one person in the world I DO NOT want to be tomorrow, it is the first person
my husband encounters at the small engine repair shop in the morning. 2 years ago, not long after Tim's
transplant, he took our $1200.00 snow blower out to clean our large driveway in a storm
and after 15 feet, we heard a loud bang and she seized up. Apparently, she threw a rod right through the block. Tim just shook his head and put
it back in the garage where it leaked oil all over the floor and a-shovelling we did go both
at our house as well as the extra large driveway at our rental around the block. I begged him
that summer to fix it before the next winter because he tends to procrastinate. True to form,
he did not listen to me and a-shovelling we did go all last winter when it snowed. This year he took
it in and the guy talked him into a rebuilt motor instead of new. He picked it up and even though something runs OK when you start it, you never know how it will do with snow. We woke
up to about 8 inches of the white stuff today and the blower would not stay running and then the
motor blew up. Unbelievable. So tomorrow Tim is going back to the shop and telling the dude
he wants his 300 clams back and despite this stupid machine being(or supposed to be) the best
you can buy, we are buying a brandy new one in a different brand. I love snow but with our bad
backs and all this darn driveway space, I really dread the big storms. 2 or 3 inches would have been fine. More later on why it just CAN'T snow this Christmas. It's already showing a possibility on the weather channel and I may lose a lot of sleep this week over that. Major thanks to brother-in-law #1 today for coming over with his monster plow and helping us out.

This made me smile today

2009-12-17T14:28:00.000-08:00

I went to our MM support group meeting today. Afterward, I spent an hour talking to a man that I met
some months ago not long after his diagnosis. I have not seen him since then. He had an auto
transplant in the interim. Our lives are on very similar paths. Our daughters are the same age.
Both his wife and myself bought a real estate investment right before our husbands were diagnosed. He was diagnosed during a bout with sepsis, I think, as was Tim though this man's was a much more frightening experience. But what made me smile was that after telling him
about my X-mas surprise for my husband and talking about living for today, he held up
his car keys which were on a fob and though my eyesight is going, I recognized the Porsche
emblem on the fob. He went out and bought a gorgeous yellow Carrera a few months ago.
A convertable no less.
He bought it used from someone in Seattle I think and did a cross country trek to get it
home with some friends bopping in here and there to do legs of the trip with him.
HOW COOL IS THAT??!!! As we left and I heard that thing purr in the underground garage
of the building, I could not stop thinking about the whole Carpe Diem deal(and missing my old turbo Mustang with the "4 on the floor") It made me sure that
I did the right thing for Tim this Christmas. (If you don't hear from me on this blog again, it means he killed me) Don't worry, I have lined up a lot of witnesses. Not sure that would worry
him at all though. So I'm gonna keep trying to live for today. I worry too much about the future.
Normal I guess and necessary sometimes but ya can't get lost in it. I'm much better at it now than I was 2 years ago. A work in progress. Note to self: buy the sports car.

"I just wanna live while I'm alive" Jon Bon Jovi

misc. ramblings

2009-12-11T19:14:00.000-08:00

My thanks for the supportive comments on my last post from my fellow MM wives. We all have those days. Sometimes it's those little losses that get to you. I'm feeling better about it now.

On Tiger Woods: Elin- DO NOT GO BACK TO THAT CREEP GIRL. I can't say I'm surprised
about this news.
This kinda thing is the "dirty little secret" of most sports. I know a woman who was married
to a major league relief pitcher and he walked away from her and their two kids to marry
a stripper he met. There's no salvaging this Woods marriage. How could you ever trust that man again?
I guess she was just a brood mare to him. Make pretty babies and get your lovin' elsewhere.
The same old "Charles and Diana" story. Take the pre-nup deal and kick him to the curb. With
your looks, you could have 50 kids hanging on your legs and men would still be lining up around the block for a date with ya.

On Christmas- I cannot wait till Christmas day. I have done something that is gonna blow Tim's
mind completely!!!!! Will post about it later but gotta keep it on the "down low" till then to try
to pull off the surprise. Nothing like a little craziness to get your spirits up!

HAPPY HOLIDAYS Y'ALL!!!!!!!!!!

Can we talk?

2009-12-07T12:05:00.001-08:00

I have spoken several times about personal things in our lives. I guess the great news is that life doesn't stop when you have myeloma and we still deal with a lot of the same issues every other family deals with... plus a whole lot more. On Friday though I had one of those moments that shows you the range of emotions you go through when dealing with MM. This tearjerker moment had to do with fertility. Now, somewhere between the 24 hour nausea and vertigo and the chronic post nasal drip cough induced broken rib of my pregnancy, I decided I would adopt before I ever got pregnant again. Most people told me I would forget how
miserable I was pregnant. They were WRONG. When Tim went for transplant, no one ever mentioned anything about banking sperm, at least I don't recall it. We probably would not have anyway but I don't think we were even told straight out that Tim might become sterile. The most I remember is our transplant coordinator telling us not to rely on his having had a transplant as a birth control method as this is NOT a good idea. Cut to today and I was a week
and a half late for "Aunt Flo". I am NEVER late. Maybe 3 or 4 times in over 30 years. But peri-menopause being what it is, I tried not to panic. I actually started to panic Friday and sent an
e-mail to Tim's doc's head nurse asking about getting Tim tested. If this being late thing is gonna be a habit, I don't want to be panicked every month or spend a fortune on pregnancy tests. She spoke to the doc and then e-mailed back to say that in his opinion,
Tim was almost certainly sterile but we would have to go to an urologist first to have him tested before we could rely on that for birth control. Now here's the thing. For one tenth of a second,
I felt relief that the chances were pretty good that I was not pregnant. For the next two tenths of a second, I was depressed that the chances were that I was not pregnant and then I just broke down
crying as I read the words(crap, I'm crying again now) that my gorgeous hunk of man most
likely cannot father children anymore. I know it sounds crazy but to think that what he went
through was so toxic and drastic that it has rendered him sterile just got to me and I lost it
just a little. As anyone in a similar position will tell you, it's one thing to say or think you do not
want any more kids, it's quite another to be told you CAN'T have any more kids. I talked to Tim
about it and tried to joke a bit and keep it light but the truth is that I'm not sure if it is better to
get the test and be able to stop worrying about birth control or if knowing for certain that he is
sterile will bother him or break my heart even more. And as I kid Tim sometimes, I may not
want to be pregnant again but who knows if his next wife will want to have kids with him.
Tim took the news much better than I did. His first question was if he had to give a semen
sample, was I allowed to come in the room with him? The man's a trooper. Now I guess we both
have to figure out if we really want to know or not. Cancer SUCKS!

Cross country in an RV

2009-12-02T05:51:00.000-08:00

Many, MANY moons ago, when I was a kid, my parents bought a 22" Tag-a-Long trailer.
They wanted to travel and show us places outside of our "box" so off we went. As a kid, you
don't appreciate learning about historical sites and such and I can remember that all we wanted to know is if the campground had a pool and a game room. I appreciate now what my parents did
and Tim and I are trying to travel with Olivia too. The most amazing thing though is that they
took us across country in 1977. My father's long time job had gotten too stressful and unfulfilling and he was going to open his own business. He figured before he signed on for that,
the time was right to do the big trip. It was amazing. We saw many of the national parks. We went to Yellowstone, Grand Tetons, Sequoia redwood forest, the Grand Canyon, Custer's last stand, Death Valley,San Francisco. WAY too many places to list. My sister and I(same birthday) turned 12 and 8 in Las Vegas. We learned alot about the American indians. Drove on route 66. The radio announcer broke in and told of
Elvis' demise when we were pulling up to the "Cadillac ranch" which was ironic since Elvis loved
caddies. My father worked in the Ford business and we had a 1974 brown country squire(yes with the wood grain decaled sides!) that had a 460 engine in it and my dad had put some high performance parts on that car to haul a trailer better and I tell ya, you have not lived till you've
watched the face of some hotshot in a sporty car get into the wrong lane at a light to cut in front of everyone only to get totally smoked by a station wagon. (Dad was a major hot-rodder in the 50's) Actually, way back then before we had traffic , they used to race across towns on a main drag for miles. One cop that could not catch up with my dad but was obviously a car buff finally found him after a race was over. I don't think he ticketed him, but he did ask him to pop the hood and show him what he'd done to the engine. The good old days! But I digress.
We climbed some mountain out west in that car hauling a trailer and the park ranger at the top stopped us and said he had never seen someone do that successfully before. That car was a brute. Pass anything but a gas station. My sisters and I truly think that this trip was the best thing our parents ever did for us. Imagine 4 girls(scary isn't it), my parents and 2 cats on the road for
2 months in a 22" trailer. It was the time of our lives though. I wish I remembered more of it and
have always dreamed of doing it again and bringing my parents. By the time I was 12, I had travelled up and down the eastern states from Maine to Florida more than once and, at the end of this cross country trek, had been in I believe 42 states of our nation and Canada. We have priceless memories from that trip. Besides the places we saw is the funny things that happened during the loooonnnngggg hours in the car where the boredom of driving through hour after hour of corn fields or dessert was mind-numbing at times. We would make up home-made jokes and sing(heaven help us cause their ain't an on-key set of pipes between us I think). I'll never forget driving through
Death Valley with the A/C off at times so the car wouldn't overheat. Yeah it's a dry heat unless
you are sitting and leaning against a dark brown vinyl interior. I was sitting behind my dad with
the window open and hugging my knees up as I sat so I was touching the least amount of vinyl possible. He hawked a loogy out his window which then whipped back into my window landing on my knee. Ah good times. It was gross but we
laughed ourselves silly over that and still do. I vividly remember driving across the salt flats(in the middle of nowhere) and talking about them. As my dad told us things about them, we wondered what those bubbles were on the ground. We drove along and talked about them, on the way to somewhere as we all are at any moment in the day, and finally I said, "why don't we just get out and see what the bubbles are?" My dad, probably realizing how silly it was to wonder when we could just pull over and truly experience the salt flats, did so and we went out walking on them and popping the air bubbles that form on the crusty surface. It was like walking on a different planet. A memorable "stop and smell the roses" moment. I also have a pretty vivid memory of the day I learned the hard way why you should never eat half a bag of your father's dried prunes at one time. DANG! We stopped to tour an old wild west ghost town and my family dropped me off at the restroom on the way in and picked me up there on the way out. The only "rootin' and tootin'" still happening in that town was in that ladies'room. Darn good thing we were towing a trailer with a bathroom that day too. Travelling was always a part of our lives and I am
SOOOOO grateful for it. To this day, I think the reason my sisters and I get along with and can
talk with anyone is that our parents "introduced" us to people from all walks of life in this whole
country. I may have taken this for granted at the time but not for long. When I went back to school, I had a science teacher who was teaching us about the hot springs, mud pots, and geysers of out west. I kept raising my hand to add facts to what he was teaching. What the mud pots smelled like(horrible, like rotten eggs, we held our shirts up over our noses the whole time),
things about the hot springs and such. The teacher stopped and said to me, "how do you know
all this stuff?" and I said, "we just spent the whole summer going across country and we went to all these places." I will never in my life forget his reaction. He literally was speechless. Even at
my young age, I realized that this man who was much older than me was teaching something out
of a book that he had never and probably would never see and here was this scrawny little kid who'd seen it all firsthand. He was so stunned that his reaction told me right then and there what
a lucky(blessed) little girl I was. So THANKYOU Mom and Dad for showing us the world(or at least as much as I will ever need to see in this lifetime). It was magical. Travel with your kids
people. It makes memories that last. I really am not a materialistic person. But that is where I
spend money. Taking my kid to a show in NYC or travelling to see new places is priceless to me.

The holidays, myeloma style

2009-11-30T06:04:00.001-08:00

This year, the holidays pose more of an illness threat than usual. This is a popular time to get
sick for our family as it is what with all the kissing and handshaking at parties and such. The
swine flu has put an extra little wrinkle in things. I did finally manage to get Olivia and Tim the
shots. We actually had to drive into NY state to get Tim's. His doc did not have them and we could not find a place closer that did. Unforunately, I had a reaction to a flu shot 5 years ago
so I cannot get one unless I sit in the doctor's office with epinephrine at the ready and since
our docs don't have them anyway, I can't take the risk of having one done in a CVS and then having a reaction. So I am trying to be careful. I have warned Tim time and again that many MM'ers
do not shake hands and kiss folks when greeting but it's hard to pull back and have to explain
all the time. So I told him that at least with family and close friends, you can explain once and
they'll understand. No dice. The man never listens to me. Heck, I'm his wife and there's times
I avoid kissing him on the lips when there's any chance I've been exposed to something or Olivia
is ill and I may be coming down with it. Our moms and sisters would certainly understand.
It has gotten really hard to entertain now. My Thanksgiving crowd went from 15 to 7 last week. My sis and her
2 year-old were sick and my 18 year old niece was sick too so that made 2 sections of our family
that could not make it. What can ya do? At first I thought it would be great to have all those
left-overs. A step on my bathroom scale this morning has me re-thinking that. Now I have to
decide what to do about this Sat. Our town has a parade and "Home for the Holidays" event
every year and we have a party since our house it at the start of the parade route. I have to
invite folks with the warning that if anyone is sick or has had a live flu vaccine in the past 2
weeks, they can't come. My best friend's 2 girls are having the swine flu mist today and she
either has to postpone or not come. Olivia will be so disappointed. The thought arises too about
whether we should even have this party. Tim hates it when our life is affected by his MM and of
course, if things go smoothly and no one gets sick, we'll be glad we did not cancel it but
I always think to myself, if he gets sick and winds up in the hospital with pneumonia, was it
worth it? Tim has truly been blessed in this area. I read many accounts of MM'ers who get
pneumonia and UTI's repeatedly and it's miserable. We all did get the flu last year and thankfully it did not result in anything too serious but Tim was wiped out for 6 weeks. He
has never had that happen and thank God it was during his slow time at work. I have to make
up my mind soon. Olivia has so many new friends who come from nice families. We have gotten
to know them well and I would love to invite them but between not having a playroom or finished basement for the kids to hang out in and this swine flu deal, I have to refrain from that. I told Liv I would do something at the end of the school year when the weather will be
warm enough for the kids to be in the yard and there will be less illness floating around. Our church has stopped the handshaking and kissing of the "peace be with you" situation as well as the hand holding during the Lord's prayer. I am still in shock that people still drink from the challis though. Others dip their wafers into it. I am not phobic about germs though obviously I am more cautious now but I have to say that I always thought this was nuts. We have a lot of older folks in our church and it amazes me that they would take that kind of risk. I guess they have more faith than I that nothing will happen. I'll stick with my little plastic shot glass. So I
guess that the key is as always, moderation. Have the party but don't go insane with the guest
list. I know that everyone is really careful about not coming around us sick. Nobody wants to be
responsible for passing something to Tim. I always clean and disinfect bathrooms and doorknobs now especially after we have had guests. You know, an "ounce of prevention" and all that. I've already warned Tim that I really don't want a repeat performance of last year's hangover even with the cabinet full of cures we have. It's unbelievable that my hubby could get
through a 4 day drip of CDEP, a stem cell transplant, Velcade and Revlimid without hurling one
single time. Give him just one or two too many brewskis though and he's tossing his cookies
the next morning. This is a VERY rare event around here thank goodness but unpleasant none-the-less. It's not that Tim drinks alot at all. It's that he's not used to it anymore and his tolerance
is WAY down. Well, here's hoping we make it through this next few weeks in good health and with no hurling. It's a short wish list. I'm easy.

Let the holidays begin

2009-11-20T10:27:00.000-08:00

GREAT NEWS TODAY. Just got back from Tim's doc and he is still in remission. No m-spike.
It's been over a year and a half now since any chemo meds. We are HAPPY about this. In 2007, we went into the holidays in a bad way. We had just found out that Tim's transplant had tanked
and he had pretty much gone through all that for nothing. It was already tough going into our
first holiday season with the "cancer cloud" hanging over us but that news was devastating.
Then last year, I was so trying to enjoy the holidays. The shock of his cancer diagnosis was behind us, he was in remission and feeling good. Then both of our tenants broke their leases
which threw a ton of work onto my plate and I went through a breast cancer scare that dragged on for 7 weeks. I can't begin to tell you what was going through my mind. A young child to raise
and both of us with cancer???? 5 or 6 days before Christmas, I am laying on a hospital gurney
having my left boob sonagrammed and I knew they found something. She was using this little
plastic thing and shooting the sonagram through it to get a measurement on what she found.
I just about lost my mind. She left to go show the doctor the pictures and when she came back
she told me I was fine. I broke into tears. It turned out to be water cysts and nothing more.
She did not know why I reacted so emotionally. Then I told her the situation and she said.
"OH. I understand now." Tim and I were so relieved. I told Tim, "So much for that boob upgrade you thought I'd get. Looks like you're stuck with the original equipment!" So today is my sister's birthday. We had an oncology appt. and I am
always nervous but the last 2 times we saw this doc on a family member's birthday, we got bad
news. I try not to be superstitious. Someone told me a long time ago that it is sacriligious to
believe in superstition. Makes sense. I don't want to believe that a broken mirror, smashed
spider or the number 13 on a calendar has more control over my life than God. So Lori's
birthday turned out to be the one that we did not get bad news on. We don't go back until
February. YIPPEEEEEEE!!!!! We are so going to drag every ounce of enjoyment out of this
holiday season that we can. I am not going near ANY doctors now. I, personally have had so many bad things happen when I get near a doctor or medical facility. They sent a reminder for
my yearly mammo a few weeks back and I was like " yeah, like I'm ever gonna make the mistake of doing this before X-mas again. See ya in 2010 suckers." I don't care if I have a whole
appendage falling the freek off, I AM NOT GOING to any doctors. So a big HOLLA to God for Tim's continued good health. Today is a good day. Break out the chocolate!

Mom's always last on the list

2009-11-19T12:22:00.000-08:00

This is the theme of being a mom and when you are a caregiver too, you can jack this theme up
a gazillion percent. You remember to do everything you have to do for everyone else and forget
or just never get to ANYTHING you want to/need to do for yourself. Will it ever change? I dunno. Two weeks ago as I was getting into bed on aThursday night, I realized I had completely forgotten about my book club meeting. Today, I just got home from picking Olivia up from school and have
been so intent on not forgetting Tim's flu shot appt. that I forgot there was an MM support group meeting today. I totally missed it and they were talking about something I wanted to hear. I spend every second of every day doing for other people and never get to my stuff.
OY!!!!!!!!

They say God never gives you more than you can handle

2009-11-17T09:12:00.000-08:00

I'll never forget the day someone said that quote in front of my brother-in-law Mike.
He called BS on it right away. He said, "I don't believe that. Look at the people who
commit suicide." You don't have to look far to find people in desperate situations. Sometimes it really seems folks get more than they can deal with. I opened an e-mail yesterday from a woman Tim transplanted with who we have remained in contact with. (Is "with" a preposition? My senior year English teacher would be mad to read that sentence) Marlene is a single mom and just a year or so older than Tim. I hated seeing her go through a stem cell transplant by herself
and did whatever I could do to help lessen her fear. She just went back on treatment a few weeks ago and would you believe had a stroke at work a few days ago. She DROVE HERSELF to the hospital
in the middle of it and after doing scans and telling her she had a stroke, they also found lesions
on her brain and told her she has MS. I just want to scream at this news. She moved here over 20 years ago from LA to get her baby son out of a bad neighborhood. Her family is across the country and Jersey is home to her now. This girl is not getting a freekin' break and I'm pretty
darn mad. I just started going to Bible lessons at my church. I don't get to church enough and being raised Catholic(I'm Lutheran now) I don't know diddly about the bible. We were reading
a passage a few weeks back where God threatens to punish a man as well as generations of his family to follow if he disobeys him. Kinda flies in the face of that "forgiving God" stuff. I sat there
and wondered which one of my ancestors screwed up so bad that I have them to blame for my
tales of woe. Now I'm wondering what the heck kinda grudge is being played out on my friend
Marlene. I just don't get it sometimes. I gotta lay down. I've got a stomach ache just thinking about this.

Starting the day with a heart attack

2009-11-10T16:13:00.000-08:00

So this morning, I am making my oatmeal when the phone rings. I get a computerized message from my daughter's principal telling me my daughter has not shown up for school and is being
marked absent. I immediately go into panic mode because 1. I dropped my daughter off at school 2. I am a card-carrying worry-wart 3. We recently had a luring incident in a town nearby
4. I just watched a show about unsolved crimes which spotlighted a lot of abductions and last but not least 5. I have never owned a pair of rose colored glasses and always think the worst.
I try to call the school right back and the darn message is still going on and won't release the
phone line. FINALLY it ends and I call the school. It's busy. I call again and again, still busy. I
am freaking by this point. What the hell is going on? I've got visions running through my head.
I get out the phone book to see if there are any other numbers listed for the school. None.
So I dial the school # on my cell phone as I run out the door and jump in the mommy van. I procede to lay rubber(that darn thing is pretty peppy) and start flying for the school knowing I
will probably be pulled over before I get there(thank goodness Tim has done the wood floors for half the cops and we know several of the rest too). I hit re-dial over and over and finally I get
a ringing and I pull over. NOW I have to listen to their automated answering system. This makes me nuts. Of course the number you have to hit is always the last option. I get a woman
and start to tell her why I am calling and she says "hold on" and PUTS ME ON HOLD. Then
another woman picks up and I start explaining again and she interrupts and says they just started a new computerized system today and it seems to have malfunctioned. I am about the
20th call from worried parents and she assures me that Olivia is in class and fine. I tell her,
"I am halfway to school in my car and having a heart attack here." She apologized for the inconvenience. I turn around and go home to my luke warm, lumpy oatmeal. About 15 minutes
later, I get a call. AGAIN with this damn automation. It is the school principal again with a recording saying that by error, that phone message went out to every parent in the school. He
apologized for the inconvenience. Nice way to start my day. The thing that ticks me off the most
is I'll bet you a whole lot of money that the MEAT-HEAD that brought us this debacle this morning makes well over 100K a year. You'd think he had enough gray matter to get this
working right before they put about 500 people into heart failure. The parents whose kids walk to school must have really lost their minds. Just one more example of how my outrageously high property taxes are working for me. Yippee-ki-yay.

What the heck???!!!!

2009-11-04T08:27:00.000-08:00

Politically speaking.......AAAARRRRRGGGGGGHHHHHHHHH!!!!!
My state just elected a man for governor who walked out of an ethics hearing because he was caught doing unethical things and refused to answer their questions. He promises to lower our taxes but he has been caught not paying his own. His campaign was won by complaining that
our current gov. did not create jobs and lower taxes. Newsflash. You cannot expect to bring tons of jobs into a
state that is in this terrible recession handed to us courtesy of the "fat-cat" bankers that cashed in on writing bad loans. You also cannot lower property taxes when the "garden state" is in
debt up to its rutabagas and you are now losing millions of dollars in sales tax revenues due to the recession. It's simple economics people. I sincerely hope this guy is not as bad a guy as he appears to me. I just still can't believe he got elected. Years ago, Tim and I were making a gas stop in Vermont on a day we were coming home from vacation there. Turns out the shop owner was born in NJ and had moved to VT years before. He had just gone back to Jersey for a wedding which was in a pretty urban area of the state. I'll never forget the way he said,
"yep, that state sure is goin' to Hell in a handbasket." Tim and I still laugh about it. I'm not laughing too much today though. That guy was more right than even he knew.
By the way, does this handbasket make my butt look big?

Out of the mouths of babes

2009-10-29T14:23:00.000-07:00

The other night, they had a republican convention-type meeting at our community center.
The republican candidate for governor was there. News cameras and all. We use another room in that building for Olivia's
cheerleading practices. After the practice, I got in a conversation with another mom and Olivia and her friend, who
was riding home with us, went into the rep. meeting as it was breaking up. Olivia got to shake the hand of the guy who hopes to be NJ's next governor. I am not a very political person but don't vote for known crooks(heck Jersey has enough trouble with the unknown crooks we've unwittingly elected in the past, I see no reason to hire a known one) or people who oppose stem-cell research especially given our current situation with MM being in our lives. I'm not a card-carrying anything though I tend to vote democratic. I think this whole republican and democratic stuff should be thrown out anyhow
and I refer to bi-partisan as "bi-port-o-san" because too many times, both sides are full of........
well, you know what I mean. So luckily, I was not in this room because Olivia decided to announce that "my Mom is voting for Corzine"(our current governor, the democrat.) HA!! I guess only the folks that were right around her heard this, one being a man I'm friends with, and he got
a laugh out of it. I had to brief Olivia on the political etiquette of not telling who mommy and daddy are voting for ESPECIALLY in the midst of a republican convention. Too funny! I passed
the guy in the hall. Did not shake his hand. Then I heard what my kid had said to boot. OOPS!
I made Liv wash her hands when we got home. His palms have been greased too many times.
Can you spell k-i-c-k-b-a-c-k?

Negligence?

2009-10-26T05:53:00.000-07:00

This coming January, there will be a 3 day trip for the 6th grade to a place in the Catskills.
It is a 2 hour drive from here. Tim and I made the decision not to chaperone because I felt
even though they were going to be very strict about not letting sick kids come in light of this
H1N1 deal, I still didn't think it was a good idea for Tim and I to be sleeping in a dorm situation in
the middle of cold and flu season. I also notice that when the kids come back from the holiday
break, all sorts of illness flies around the school for weeks afterward. Tim does not want Olivia to miss out on things because of him but we can limit the exposure a little by not putting all three of us in this situation. The problem not chaperoning presents is that Olivia gets carsick BAD. A bus is hands down the worst type of vehicle to be in for this so
we have to drive her there and pick her up or risk her getting sick in a bus with no bathroom
which is humiliating and if you think kids will not mock her for this, you'd be wrong. I do use
a very small amount of dramamine with her but I'm not sure this amount would work well enough for a 2 hour bus ride part of which will be on country roads. If I give her more, she will
be asleep and unable to function at all both in the bus and for several hours after they get there.
The other problem is that they will use chartered buses without seatbelts. I don't understand this. There are all these laws about using carseats, boosters and seatbelts with kids. You can be
ticketed for breaking these laws but you can put kids in buses without belts anytime with no problem. Have you ever seen those news reports of what happens in bus accidents? The kids
are catapulted out the windows and there is often fatalities and critical injuries. Last year, the principal let Tim and I drive her to a day trip and we chaperoned for them because he considered this carsickness to be a medical condition that warranted it. This year we have a new
assistant principal who tells me the other day that she either goes on the bus or she misses the trip. That is the school policy. When I ask him how he will accomodate a child who is throwing up
and usually has a stomach ache that leads to her having to go to the bathroom at the same time
on a bus with no bathroom, he tells me he will have to check into this further and get back to me.
He also was not aware that we had been allowed to drive her last year. I'm waiting for the phone call with his decision. If it is the wrong one, I will be telling him that my daughter is going on the trip, we are driving her and if he wants to take this further, have at it. He thinks I am trying to
make a story up because of the seatbelts. I told him I would be happy to have Olivia's doctor
speak with him about her motion sickness. BUT even if the problem was just the seatbelts, isn't that a good enough reason? If something happened to her, I'd never forgive myself. One of the roads they will be on is the New York State thruway. My sister lives up that way and you would not want to give her a dollar for everytime she sat in traffic going home from work due to yet another fatal accident on that road. I don't let me daughter drive with people I don't know. I'm sure there are lots of great bus drivers out there but let's face it, there are many who just plain
can not get any other job. I know a woman who drove a school bus for years. She had a heart condition and was in the early stages of alzheimers when they finally pulled her from driving but still let her be a bus aide. I know a man who has diabetes and could not feel his feet well and was
still driving a bus. I don't want Olivia on a bus with no belts. We'll see what this guy comes up with. There are quite a few parents nervous about this especially considering we could be dealing
with weather conditions that time of year. They are all being told, it's the bus or your kid stays home. I'd love to see a law passed that forbids transporting kids like this. Along with that, I think
it should be totally illegal to put young kids on motorcycles with you. I've seen kids as young as
3 and 4 riding with daddy on motorcycles that don't even have sissy bars. Makes me crazy. Those kids have no idea how dangerous bikes are. I think it should be outlawed. I have nothing against motorcycles. Used to ride a dirt bike myself. But putting a kid on a bike on these roads
where we have a gazillion cars per square mile is insane. I sold my bike 2 months after I had Olivia. I decided not to take unnecessary risks with my life but I REALLY don't think it's right to take unnecessary risks with a kid's life when they are too young to understand the dangers.

Blog Etiquette(warning: totally humorless topic)

2009-10-22T09:38:00.000-07:00

Well today, for the third time, I saw someone completely bash someone on their blog because
they did not agree with an OPINION they had. I can't tell you how much this frosts me. Then again....maybe I can. I don't know how many people read my blog. I have actually not given the site address to more than a few people I know. To me, this is my place to vent. Though I try not to offend, the truth is that
if I do, anyone has the option NOT to read my spoutings. It is cathartic to me to get my beefs down and then send them into oblivion. I know that I sound like a major whiner at times(especially in 2008, it was a tough year), but before people bash someone on their own blog,
I wish they would stop to think that this is THEIR forum. This is where they get the microphone and get to heave things off their chest. It's a form of therapy. If you'd like to throw an "AMEN" at them or a supportive comment, TERRIFIC and if these meanies and nay-sayers would like to set up their own
blog and spew their baggage into the WWW, have at it but to sucker punch someone on their own blog is inexcusable. In the one case, a young woman who is fighting for her every breath
after a MUD transplant for Hodgkins that ruined her lungs was blasted by a woman when this gal wrote about her
disappointment that her new husband bailed as soon as she took ill. Horrible. In another case,
a man totally took the wind out of another guy's sails by insulting him and then making an uneducated and negative prediction about his medical status. Today's was the last straw. I stumbled onto a blog some time ago of a family in New England whose son is fighting neuroblastoma. Their beautiful son is just 5 and has endured over 50 rounds of chemo since his dx at 7 months old. He has been deemed incurable and this man is frustrated by a lot of the same things the MM community faces too. Tryng to get access to experimental treatments and the whole clinical trial
and FDA approval processes that keep lifesaving drugs from those who need them and sometimes have no other options is a heart wrenching thing when your kid's life hangs in the balance. Someone blasted this man on his own blog about an opinion he stated concerning government monies spent on another illness. He did not begrudge funding for this illness, he just wished that a small amount of the money spent on one of the the less important aspects(nothing to do with treatment or research) could go to saving innocent little kids like his. I should elaborate that the majority of the people who have this illness, got it by taking the risk to expose themselves to it AND this blogger made it abundantly clear that he was not passing judgement on those who got it through no fault of their own. I'm not surprised that the coward that wrote this awful comment on their blog keeps an anonymous profile. I wanted to comment right there on that blog but felt I would be bringing too much of my own opinions so I'm venting here once again. I must say here and now that I feel the ONLY thing that gives any person the right to have their OWN opinion is having R-E-S-P-E-C-T for the opinions of others. Here's the beauty of living in a free country. YOU DON'T HAVE TO AGREE with anyone. BUT YOU SHOULD have the grace to respect their rights to their own opinions and mindsets. I cannot believe the heartlessness of some of these comments I read. Truly venomous. While the internet can be an
amazing resource, it does also give a venue to a lot of mean and bad people out there. There is never a justification for kicking someone when they're already down. Luckily, I have some lovely people reading my blog. But if any meany comes along on here and sucker punches me, I just may have to
hunt their raggedy ass down. They don't call me "nasty niecer" for nothing! Sorry for the seriousness here folks. Unfortunately, it ain't all fun and games in "cancerland."

The sex talk(T-M-I about TIM)

2009-10-16T05:37:00.000-07:00

Tim had his transplant in Sept. of 07. In addition to one of the weirdest sex questionaires I'd ever heard re: have you ever had sex with an animal or a person from the Ukraine or a person from the Ukraine who has had sex with an animal. YIKES, I don't want to know what amoeba it is these people from the Ukraine are carrying. Anyway, we had to take a several hour long caregiver course before he went in that was given by one of
the many candidates for the "nurses of HUMC pin-up calendar." Then, when we checked in, we
were given instructions again in a huge printed booklet. On the first page, it said at
the bottom in bold capital letters ABSOLUTELY NO SEXUAL RELATIONS. I knew about this,
as did Tim I believe, and honestly, I did not think it would be an issue with the nausea and all.
Well my hubby must be the only man who could take that bottle of napalm, be nauseous and weak, and still follow me around the condo looking for some action. I guess having time to kill and no kid around to worry about were the main reasons. I held out though(not my normal M.O.) while he told me many times, in words I won't report here, what he thought of
this Nooky ban. Actually, I'm not that strong. I purposely made sure we had no birth control method on hand and that's the whole reason I could hold out. Tim persisted and said, "do you actually think any of my swimmers survived that chemo?!" Now that's a line you don't hear everyday. Poor Tim, his "fellas" were flaming red one day from thrush and blue the next. ;o) On Tim's last day in transplant, I tried to think of how I could ask the transplant doc privately when we were allowed to end this ban. You see, every day from about 8 or 9 in the morning till about 5 at night, we were in a "transplant day room" at the cancer center. Tim would be in a lounge chair
and me in a chair by him and there was nothing separating us from the nurses' desk or the other transplant patients , who we had become friendly with in this time and still are, but a curtain that would be pulled around when the docs or nurses were doing something with him. So the time comes and Doc R. comes in for the final check to discharge Tim. He is a slightly built, soft spoken, kind man but has a quick wit. So I POINT to the sentence on the printout and ask him when this is lifted.
I'm thinking GENIUS right?! I pointed, he's just gonna give us the day. Mission accomplished! Well he immediately breaks into a broad grin and says "let me explain." OH CRAP. So he starts to explain why it is banned. I'm thinking, I know exactly why it is banned, I didn't ask that. Just give me the day doc! Now I'm trying to figure out how to interrupt this without being rude.
So as he is talking about how low Tim's platelets are, he says, "there is a certain amount of trauma involved in that activity." So seeing my chance I say, "Doc, we've been together 22 years,
there ain't no trauma going on at this point." Then, Mr. macho TIM says to him, "Doc it's been awhile, trust me, there's gonna be some trauma." Damn. Now by this time, we are laughing. I know that our new friends are hearing this. I could smack Tim for ruining my kibash on this AND "awhile" GIVE ME A BREAK. It's only been this 2 weeks we've been in here for Pete's sake. JEEZ! Now after Tim's statement, I'm thinking, "heck maybe they oughta check my damn platelets. I may be in trouble here." So finally the doc ends by saying,
"So, my answer to that question is this. If it's with your wife, then you have to wait until you have 50,000
platelets. If it's with someone other than your wife, I'm sorry but my answer is NEVER."
By this time, the three of us are laughing and I'm thinking our transplant buds must all be suppressing laughter. So much for
this private conversation. This doctor really is the greatest guy though(extra points from the wife for that last statement) and I guess we could all use a laugh anyway. It was a memorable way to end Tim's transplant no doubt. The P.S. to this is that, a few days later, we went back for
the follow-up check-up and to have his hickman removed. Unfortunately, due to a snafu with Tim's stem cells that we did not hear about till 4 months later, Tim's blood counts were not coming up as they should have. The vascular surgeon pulled his hickman anyway despite his cbc only showing 36,000 platelets on board. On the way home, he bled right through the huge packing and his clothes. I had to call the surgeon and go home and stop the bleeding myself and re-dress the wound. If it did not stop, she said we'd have to go back for a platelet infusion. I was ticked. They never should have pulled this thing out that day so I said, to heck with this nooky-ban. If they can pull a catheter out of 2 main arteries with 36K platelets, we
can certainly do the "wild thing" platelets be damned. Game on!

A funny thing happened on the way to the cancer center

2009-10-05T18:02:00.001-07:00

I have heard some hysterical stories on blogs I follow that happened during treatment or
transplants for MM. I just started following a blog of a young guy who is starting treatment
and his wife posted a shot of him in his hanes showing his BMB site and jokingly he said maybe he would attract more blog followers posting pix of his butt. It's a fair bet. I've seen the picture.
It got me to thinking (and commenting on his blog) about the ICU nurse who came up to tell me my husband had a cute ass after his first BMB. My husband has gotten more than his share of TLC due to being young and pretty darn cute as I'm sure this guy will too. But back to the funny stories, here's a throwdown for any of y'all who read this blog to share your funniest or most embaressing story. I know MM is serious business but these light moments I read about courtesy of my fellow MM caregivers or patients always bring a much needed guffaw out of me.
So the first one that pops into my mind happened during Tim's transplant. I have said before that the transplant dept. at HUMC is loaded with some of the hottest nurses. I'd like to meet the man that does the hiring there. I mean, give a worn out wife a break with this will ya. I actually told an older gent at a support group meeting once who was on the fence about doing a transplant to go meet the nurses there and he'll be off the fence and signing up in a heartbeat. Luckily, the nurses were all really nice too, even the one with the breathy, squeaky, happy birthday Mr. President Marilyn voice(even if her voice did raise the hairs on the back of my neck.) Tim, being the youngest, buffest patient in the transplant
day room those weeks, got lots of attention. He seemed to be surrounded by these gals everytime I got back from visiting our daughter. So to explain this event, I'll have to tread lightly lest I make y'all think I'm brash or lacking in class. Tim acquired an affliction that I believe was caused by the strong antibacterial soap they made him shower with daily. I believe it was a thrush type reaction and it hit him in his private region. In layman's terms, he had "GREAT BALLS OF FIRE." So much for treading lightly. :o) I reported this to his nurse after he spent the whole night in pain and VERY irritated. She reported it, by phone, to the woman doctor who was doing rounds that day. The doctor tells the nurse to inspect aforementioned B's-O-F before she will prescribe something. Now, just to prove to me that there is a God, Tim's nurse that day was a very nice but "not stripper material by a long shot" woman that I liked immensely. I felt so sorry for her. She turned beet red and broke into an absolute flop sweat. As for Tim, he was not bothered by this at all. I couldn't figure out if this should have worried me or not. If I was told I had to flash some male nurse so he could inspect my hoo hah, I think I would be the one in a flop sweat. I am
not a man though and as far as I know, Tim had not had a new audience for that area in 22 years. To make matters worse, to save an unnecessary walk to the john all hooked up to an IV pole, she told Tim to just wait until he had to pee next so we all had a good long time to think about this which was most upsetting for this blushing nurse. When she and Tim finally went off to the bathroom together, I jokingly said to them, "if you're not out in 5 minutes, I'm coming in after ya." Someone pointed out later that a lot can happen in 5 minutes. Good point. Well we finally got the nystatin powder. Problem was Tim was not allowed to go near anything like that as he could have a problem if he breathed it into his lungs. He had to mask up and I got to do the
honors when we got back to the condo that night. He said, "sorry." I said, "are you kidding, if I didn't know I was gonna get to give you showers and see you naked all the time, I wouldn't have signed up for this transplant caregiver stuff. These are the PERKS." I'm not sure if this reads all that funny but it was pretty darn hysterical for us. Stay tuned for the "when do we get to have
sex?" talk we had with Tim's transplant doctor on discharge day. Maybe I am brash. ;o) If you are going for a transplant, I will tell you what they tell all women about to give birth. Check your modesty at the door.

navigating life's highways

2009-09-29T05:50:00.000-07:00

On Sunday, we went up into New York state to celebrate my niece's 7th birthday. My parents
were sick so Tim and I offered to pick up my niece's gifts and bring them to the party. It added
45 minutes to our trip but if we didn't, my mom intended to drive to our house and back to drop
them off. I normally take back roads to my parents' house but to save time(not really) and try to
get Olivia from point A to B to C without carsickness and medication that makes her grouchy, I
took the highways. NOT a good call. It was raining and there was some crazy phenomenon going
on on route 80. I always drive slower in the rain especially after hydroplaning in Vermont one time driving my husband's old monster-tired bronco. TRES scary. So I am driving down route 80 and we see an empty SUV that was resting along the curb backwards. Then we see cops at 2 sites. One of which I was not sure of the reason but the other was another accident. Then we see yet another car on the side of the road. I started to tell Tim and Olivia of the time 20 plus years ago when I saw a kid in a small car come onto a highway and quickly cut across 3 lanes of traffic right in front of me only to hit an oil spot or something and he spun around and wound up facing the wrong way in the fast lane of another crazy highway near the one I was on. I'll never forget the look on his face. Just as I finish this story, the SUV 2 spots ahead of me begins to fishtail. He loses control and starts spinning all over the highway. At one point, he almost flipped over and he just missed hitting the curb 2 lanes from where he started. He got back going straight and by this time, I knew there was something wrong with this road. I backed
off the gas even more and started white knuckling it. As I passed the truck that did this, I saw that the man driving was stunned and the woman in the passenger seat was holding her head in her hands obviously quite upset. Just a few seconds later, a large car behind me spun out and started going across lanes of traffic circling as he went and crashed into the curb or guardrail on the shoulder of the road. OK, now this is insane. If it had not been my niece's b-day, Olivia wanted us to take her to a nascar race in Delaware and here we were feeling like we were driving in one ourselves with cars spinning out left and right. I pulled into the slow lane and backed it down even further. I prayed to make it to the exit and wondered if this could be oil rising up with this rain or what. Years ago I was told by a southern California guy that when it rains, their
roads turn to oil slicks because of the build up that results from so little rain and he said accidents are very common. That was the only way I could explain what we saw this day. It was scary. We got to my mom's safely and Tim took over driving to my sister's with me watching the
speedometer and yelling if he went too fast. I wondered if we would hear about this on the news and sure enough, it made the paper yesterday. There was a total of 43 accidents on that stretch of road but they blamed it on speeding drivers in the rain. Not true. I don't know why we made it through unscathed. I thought back a few years when I got new tires for the mommy van. I told the guy, "I don't want the cheepest tires you have for this vehicle. I want the ones you would put on it if it were your wife's car." Tim was with me and said "Wait a minute, you don't know how much he likes his wife." I said, "OK then give me the tires you would put on your own car." I think it's crazy to save money on tires. I told the guy that I wanted the best rain handling tires he had for my car. Maybe that was why this didn't happen to us on Sunday. I thought too of all the little things in life that change it's course so drastically, like timing. The two cars that had just spun out right near me somehow did it when there were not cars in the lanes that they spun across. We ourselves should not have even been on this road were it not for Tim saying we would do this favor. We tread a thin line all of our lives between life and death, good times or
catastrophe. I knew as I drove down that highway that we could easily be next and it might not end as well as the 2 I'd just witnessed. I also felt a little bit like I have felt about Tim's remission and his MM battle. I know several people who have relapsed and others, that I know from blogs or the acor list, who have died. For the last 16 months we have been just white knuckling it and trying to stay straight and in control while all around us others are spinning out and losing their sense of control. You don't know why things happen as they do but you are painfully aware of your vulnerability in this process. Life is so random. It changes in the blink of an eye. Everytime you get in your car, a zillion stars align that either get you to your destination in one piece or not. Every second is another chance for the path of your life to change
course dramatically. We are all faced with the same exact risks. I applaud those people who can
live their life without ruining it with the "what if " disease that I have had for years. Being a worry wart may have saved my ass a few times but it's also ruined my chance at real enjoyment at others. I know that I will be staying the heck off route 80 for awhile. Why push it? I sent a thankyou heavenbound when we made it to our destination and hoped that everyone else on route 80 that day at least stayed in one piece. Man, life is risky. I heard a quote one time that said something to the effect of, "you can't be so afraid of dying that you don't start living." I guess it's another one of life's "fine lines." I guess somewhere there is the perfect balance between care-free and careful. I haven't found it so I keep praying, being grateful and worrying,
not exactly in that order.

I don't get it!!!!!!!!!!!!!!

2009-09-15T10:22:00.000-07:00

I was coming home from dropping Olivia off at school today and I hear on the radio that the Ukraine is not going to allow Elton John and his partner to adopt a 14 month old orphan with
HIV. The reasons are that you cannot be more than 45 years older than the child(I read just now on the web that Elton is 62 but his partner is 46) but the REAL reason is that they refuse to recognize that gays are married and you must be married to adopt(translated, you can't be gay). I just can't get my brain around some of these adoption rules. I think all adoptions should be looked at on a case by case basis. You have to think of the alternative for this poor kid.
I mean, what rocket scientist thinks that he is better off in an orphanage instead of
with 2 men in a LONG term devoted relationship? And I hate to bring money into it but this child does have a serious illness. The Ukraine folks admit they have a hard time getting people to adopt their sick orphans and lets face it, Elton has more money than he knows what to do with
and could get this kid the best medical care in the world as well as opportunities that he couldn't even dream of. I saw a TV program not long ago that showed the unimaginable mental problems that a lot of the adopted kids from this area have due to conditions
in orphanages. They have "failure to bond" issues and things I've never heard of. In many cases,
the families that adopted them have had to give the kids back. They cannot cope or the adopted kid is trying to kill their other child. One family on this program did not give the girl back but this angry, violent child has ruined their quality of life completely and they've spent enormous amounts of money trying to get help for her. The longer they spend in orphanages, the greater the chance that they will not develop normally and be plagued with problems probably for life.
There are many loving homes out there. They may be gay couples, they may be single but I sure think if they have the dedication, desire, and the financial ability, it sure beats having a child stuck in the system. We have a lot of gay couples in our neighborhood. They are all really nice and fit in wonderfully around here. To be honest, there a few straight couples that we all wouldn't mind seeing "for sale" signs on their lawns. Being gay does not stop you from being a loving parent. Hell, if Elton wants to adopt me, where do I sign. I know ALL his songs even every word to Captain Fantastic and the Brown Dirt Cowboy. I don't understand what the darn song means
but I KNOW the words. Can I have my own horse? PLLLLEEEEAAAASSSSEEEEEE!

The walls are closing in

2009-09-14T09:13:00.001-07:00

Well it's that time again. I am trying, once again, to clean out our spare room and create a much needed office for myself. I just do not know what to do with things that can't be in the heat of an
attic nor the dampness of a basement. If anyone tells you that clutter does not cause stress,
THEY'RE LYING!!!!! Tomorrow, it will be 15 years since we closed on this house. We are still not done with the renovations that were started back then and I will NEVER do this again. We gutted this place completely but not all at once. We have accomplished an awful lot but then everything came to a screeching halt and has never resumed. As if that
were not bad enough, our house has become cluttered up with stuff and we have outgrown this place before we have even finished it. This all bothers me, a lot. I have had numerous yard sales along with my mom, sisters, and even a few friends who take advantage of our location to unload their junk but still,
it keeps building up. To buy a bigger house is not an option now. I pay ridiculous property taxes. I don't want to pay more so I must figure out a way to get rid of what we don't need and organize what we can't part with. Problem is a lot of the junk is Tim's and he is both sentimental and too busy to go through it. When I get started I wind up getting so frustrated that I quit or just never get to finish the tasks for lack of time. If I didn't have to foodshop, cook, clean, pay bills, do business paperwork, run my mommy taxi service, and make good on the volunteering I do with Olivia's activities(girl scouts, cheerleading, softball), maybe
I could actually start and finish a large task around here but alas, there is no one else to fill in and
do all those other things to free me up. I picked Olivia up from a friend's house the other day.
They have 4 kids in a house smaller than mine. OK, her house is not neat either but we have
1 kid for crying out loud. My house should not be overrun like it is. On the other hand, my one neighbor has 4 kids(whose friends are constantly over there),
2 dogs and a cat and every room of her house looks like a page out of a Pottery Barn catalog.
Makes me wanna hurl everytime I see that. I wish I could be the type that could just chuck it all.
I can't see putting furniture and good stuff in a landfill when folks can use it. I also don't mind the many occasions I have sold over $1200 worth of stuff in one weekend. It's a ton of work but a win-win situation in my mind. I truly believe something Bette Midler said on a TV show one time when talking about how little her daugher had. She said, "the more you have, the less you value it." It certainly is true with Olivia. She has way too much. I stopped buying things a long time ago unless it was for birthday or holidays. But the stuff she gets from everyone even then
is too darn much and I don't think she values the stuff at all. It's all in the "getting" for her.
Once it's "got", the thrill is gone. She does not get this from me. I don't like to shop and rarely find anything I need or desire when I do. I have learned that stuff begins to own you if you have
the wrong attitude about it. It's amazing how little you need to get by and more than that, how
much happier you'd be if you were not bogged down with crap. I've been bogged down for too long. Time to dig out.

Road rage in NJ

2009-09-08T17:05:00.000-07:00

I have said that NJ is famous for road rage. It's truly unbelievable. I could go on forever about the things idiots do around here and sorry ladies but the "soccer moms" are the worst. Many, notice I did not say all, can't be bothered stopping at stop signs even if it means pulling onto a main road and cutting you off. They never use turn signals cause they're on the damn phone and don't have an extra hand. There are way too many narcissistic people in this state who purposely ride on shoulders or in turn-only lanes only to cut back into traffic after passing all of
us "little people." I have said that if you ever wanted to lower the population of this state, you would need only to pass the "right to carry firearms" law and there would be bodies laying
on every highway and suburban street in this state. Maybe an even easier way would be to put everyone on dex. Actually the way people behave here, maybe they already are hopped up on dex.
I am a pretty calm driver. I don't look for trouble but it is hard not to get ticked when someone
does something illegal or damn near runs you off the road coming into your lane and then flips YOU the bird. Getting cut off is an almost daily event. Now add the PMS that accompanies peri-menopause to this mix and I can tell
ya truthfully that if I was on Dex, I would have to stop driving in this state. Yesterday, we went
to a mall I have not been to in probably 15 years. I hate to shop and this is one of the biggest and busiest malls in NJ and it was Labor Day too. We were going to buy one of those sleep number beds and I knew it would be mobbed. So you know what you're in for and you take a deep breath, relax and just deal with it. As I waited in an aisle for a couple to get to their car and pull out, a woman pulled behind me and proceded to honk her horn like crazy along with the old
arm flapping gestures and all. I gestured back that I was waiting for that spot. She did not give a rip. She wanted me to pull over to the side so she could get around me. Now obviously, she did not care that in these very narrow aisles with all these SUV's sticking out I would then not be able to angle my car into that spot without a huge amount of trouble. But the idiot also was not going to be able to make it around my car even if I did pull over the little bit of area that was left. The last time a woman tried something like this, she took the back fender of my mustang with her.
She continues to lay on the horn. I see that there is a handicapped tag hanging from her rearview and she has a man in the passenger seat. They were older than me but finally, I had had it. I put the car in park and start to get out to tell this woman what she can do with her horn
and Tim grabs me and doesn't let me get out. He later regretted this as she still did not stop and
the woman pissed him off too. So I put my car in reverse so my back-up lights went on and
got a little bit of satisfaction from the worried look on her face and she quick put her car in reverse but had nowhere to go. I must say that this tactic was much more fun when I had a stick
shift. You could put the car in reverse and hit the gas like hell with the clutch in and it makes it
more entertaining to watch their reaction. Finally the people got out of the spot and I pulled in but obnoxious lady, if you're out there, here's a few tips. 1. If you don't have any patience whatsoever, do not go to the Garden State Plaza on a huge sale day. 2. Do not beep incessantly at a sleep-deprived, worn out caregiver who has PMS. Truth be told, you are lucky my husband was in that car. You darn near got WAY more than you bargained for. I had seen a bumper sticker that I just loved on the computer or somewhere. I never thought I'd see it on a car lest
I was tooling around in Texas. I finally saw one on a guy's car just a few weeks ago and I laughed.
It says, "Keep honking, I'm re-loading." I'd love to put this on the mommy van but somehow think the moms of Olivia's friends might be just a little nervous about play dates and carpooling if I was sportin' that beauty. It's temping though! So here is a final lesson to any road ragers that might be reading. An old school friend of my sister was a chronic road rager. He looked for a challange everytime he drove. If someone passed him on the highway, he thought they were
looking for a race. So one day, it all caught up with him. I believe he was still in his 20's(it's quite some time ago now). He starts road raging someone on a busy highway near us and loses control of his pick-up in the process and flips the thing into a pole. He died. His family was devastated but everyone that knew him was not surprised. And these darn cell phones! A few years back, they landed a medivac helicopter at my daughter's schoolyard. Seems a woman a few towns away was talking on her cell phone with her 2 kids in the car. She ran a red light and got hit by a bus. Her kids were banged up. One had a broken pelvis. The mom was in bad shape. This was so heartbreaking. She lingered for a week in the hospital and then died. I know. Stinky stories but they are true and stuff like this happens every darn day. Look people, like the "High School Musical"
song says, "we're all in this together." So take a chill pill, be considerate, get off the damn phone
and drive for Pete's sake!!!!!!!! AND PLEASE DO NOT beep or flip birds at caregivers with PMS.

A caregiver's view

2009-08-30T17:44:00.000-07:00

The MM listserv is having a discussion right now on caregivers. One person wrote in and said
something I always think about when I meet others with MM who don't have a caregiver
per se or live alone etc. I don't know how they do it and more than that, I wish they didn't have to go through this without someone who "has their back" without question. I have always been the type of person that jumps in and helps others but what I have done in the last 2 and a half years is so much more than that and SO much harder. Some of the hardest things to deal with is seeing someone you love more than air have to go through this, having to function at your highest level ever when your heart is busted in a million pieces, trying to care for and preserve the childhood of a kid while you're taking care of your hubby, and, at times, the disappointments
that you feel with some people at a time when you can tolerate that the least. There are days that I have felt like "wonder woman" and others that I feel I'm standing on the edge of my sanity. Last summer at this time, I felt very close to "losing it". I had a lot of aggravation to deal with at our rental house
and the pressures of having too much on my plate got to me big time. My posts at this time sure reflect my desperation. I was glad to say goodbye to 2008. There's also the problem that stress magnifies the good and bad in your relationship and though Tim and I have a strong marriage, there were times that the "not so great" aspects were much harder for me to deal with. I felt even more hurt than usual that he could treat me badly after all we've been through and the guilt I feel if I argue with him now is overwhelming. We may be living this crazy nightmare but ya know, he still ticks me off sometimes and vice versa, I'm sure. I did finally put my foot down and flat out told him that it could not go on. With all the crap I was dealing with from tenants, my home needed to be a place I could be without takig more of the same. It's also hard that Tim has always been the tough
guy I could lean on and at the worst time of my life, I feel I can't. He is dealing with so much and
beautifully I might add and I don't want to burden him with anymore. I can't cry on his shoulder
when he is faced with a harder situation than I by far. My poor mom and sister have felt the brunt of that. I need someone to talk to. All in all though, I think all three of us have done a bang up job of holding up. I think that we are selfless enough to be strong for the other two and I realize that even our daughter is doing this. I have been a little too selfless with my caregiving as I have seriously neglected myself and all attemps to correct that have pretty much
failed but my kid and my husband are doing well and I am happy about that so I guess in a way,
I am doing that for myself. When I see all the divorce around and really cruddy relationships, I
realize that Tim and I are luckier in that department than most. We've been together for 24 years and we still enjoy each other's company, respect each other and are truly friends. I told him when he was first diagnosed that he will NEVER go through anything alone and he hasn't.
The day we checked in for his transplant,(we stayed in a condo 2 blocks from the hospital where I cared for him whenever he was not at the cancer center) I told him,
"Tim, I just want you to know that there is NOTHING I would not do for you." He said, "good
can you take this chemo that they plan to give me then?" I said, "Tim, I just want you to know that there is ALMOST NOTHING I would not do for you." We haven't lost our sense of humor
either. There's just no way of knowing how you would deal with a situation like this until you
are in it. I'm pretty proud of all three of us but Tim the most. I think his mental strength and
ability to go on with his life in an amazingly normal fashion is what makes it possible for me to
hang tough for him. He blows my mind and I think both of us have new respect for each other seeing what we could do when put to the test. And I think that anyone who is waging their MM
battle without a partner like that is truly incredible. They are the true supermen and women.

Of good news and miracles

2009-08-22T07:05:00.000-07:00

Yesterday was Tim's doctor appt. We only went 2 months this time because his immunofixation test last time found a little band. I had gotten conflicting reports about what this meant but personally thought that this test only came out positive if it detected monoclonal cells. Turns out
I was right. I am always nervous about these appts. and I know Tim was apprehensive too though you'd never know by his blood pressure. 115 over 75 in a freekin' oncologist's office.
If they took mine, they'd have me on an beta-blocker drip in minutes. I expected to see an m-spike reading and was trying to console myself by recalling what a blessing it really is that he went into remission at all and has been off all treatment for over 15 months. Despite an almost empty waiting room(Friday seems to be the day to shoot for), it still took some time to be seen
and then we did not see his doc, though he checked on him later during his Zometa treatment to ask how he's feeling etc. The girl hands me his lab reports while we wait in the examining room
and I see that both the urine and serum immunofixation tests are completely negative. I smiled broadly as I know Tim watches my face everytime I read these and we were so relieved. Tom, the nurse practitioner, said that he is still in remission. A little "noise" was detected last time but it's under the radar again. His
white cells are just a hair under normal and have been holding there and this is unlike he has
been since diagnosis but a real good sign. His hemoglobin will always be low, I'm sure. Your bone marrow gets brained from transplants as well as Revlimid. It hangs out in the high 12's or low 13's. We do not have to go back for 3 months again now. This in itself is a blessing. The people in this office are wonderful and we like them so much but these appts. are hard, hard and it's great to be able to put this out of your mind(just a little) for more than 3 weeks at a clip. I'm glad now that we did not tell everyone about what happened last time. I really did not know that he could go back to 0 m-spike after that but Tim wanted to keep it quiet till we had more concrete answers. You realize when dealing with cancer that everything is so relative. I mean, we are living a nightmare. There's no doubt about that. When I really think of what is going on in our life, the tears spring immediately but you have to put it all into perspective to save your own sanity. There are people who never get treatment breaks after diagnosis. There are people with worse cancers than MM. There are kids who have cancer. You never have to look hard to find a situation that makes you realize that blessings are still happening in your life. I don't know if I have written about this before but our best friends' cousin died very quickly of pancreatic cancer a few months ago. She was in her lower 40's and had 4 kids aged 3 to 8. By the time they found it, there was nothing they could do. She was gone in just weeks. I know this is a downer to read
but it just drives it all home how crazy random life seems to be. It makes no sense but it is what it is. Tim says this whenever we go to his doctor's office. "It is what it is" seems so flip but it's true.
If you think you can control your life, you can't. We just have to try our best to cope with whatever comes along. I find it is a constant mind game that I have to play with myself. When the thoughts get too sad, I have to force myself to try looking for the positives. I have to try to live in the present as much as possible. Sure, I worry about the future but I try to stop myself when I do it too much. Worrying now does nothing to help and things are good now. We have to try to enjoy the fact that Tim is living as good a life as he can under the circumstances. He is functioning at a high level and we are able to do things. Living in the past or the future is a big
ol' waste of today. So, here's to today, my friends! :o)

Hold on to your hat, she's spoutin' off again

2009-08-06T12:30:00.000-07:00

So here's my beef for today. I just went to a Walgreens to do some school supply shopping
as I know there will be little left when we get home from vaca. And is it just me or do you
get annoyed when kids working at stores think that everyone around them is so interested
in what they have to say that they talk(read yell) to each other across the store, don't work, take forever to ring you up because they think you actually want to be stuck there hearing about their night last night and think it's appropriate to curse in front
of customers. A woman with her 3 kids and myself were trying to read the sales flyers and find the items in the school aisle while 2 boys, who were supposed to be unpacking stock, were
making "jokes" and being so loud that none of us shoppers could even concentrate. The talk was loud and relentless.
Then one of the boys made a joke about how he'll have cancer in a year. Then the words
"drunken playboy" were yelled out and the other woman had enough. She said, "hey guys, there
are kids around and that's inappropriate." I said "yes and besides that, you 2 are so loud, I can't hear myself think. I know you think that we are interested in what you're saying but we're not
and making a joke about cancer is not funny at all. There are plenty of people who have cancer
in their family who don't think it's a joke." So then the boy who said it says,
" my mom had ? cancer a year ago and I acknowledge that." But he said it in such a way as to say that he's allowed to joke about cancer cause he does have it in his family. So I said, "then you should know better and be thankful that you don't have cancer". Well I could tell that they thought I was super square and that they actually do think that most
people are riveted by their conversations. There was a girl standing right in the aisle with them
being really quiet
and I noticed her name tag said asst. manager. She looked all of about 18 and obviously does not
know what her job description is. So I ask the woman I check out with who has worked there for
some time and is probably the only non-teen in the store, "did you hear them talking like that?" The aisle was right by her register.
She told me that she wasn't paying attention. I said, "their behavoir is rude and obnoxious and
for someone whose husband has cancer, their joking about it is not funny." Hell, it shouldn't be funny to anyone. The woman behind me was nodding and agreeing that these kids were out of control and I got the "oh you poor thing" look from her as soon as I said my husband has cancer.
I was pretty mad but talking controlled. I said, "I know all these kids think we are just so interested in everything they have to say but we're not." I'm sure no one is sicker of hearing them talk than her. Then I walk out of the store and hear the F-bomb as I
exit the door. The asst. manager is leaning up against the building having a smoke with some guy who she knew but did not work there. The cuss was not directed at me, it was just part of their conversation. I turned around and walked back to her. I said,
"you are a manager here?" Answer was a deer in the headlights look and a meek "yeah."
I said, "this whole shopping experience was ridiculous. You stand there while those boys were talking like that inside and do nothing while they irritate all the customers." She said, "I was trying to stop them, they wouldn't listen to me." I continued "and now this kid flings the F-bomb
as customers are exiting your store and again, you do nothing." She said, "he doesn't work here.
I have no control over him." I said, "it doesn't matter if he works here or not. He is in front of your store cursing.
That is absolutely unacceptable." I said, "your employees should not be joking about cancer,
saying inappropriate things in front of children or being so loud and obnoxious that people don't want to shop here anymore." She says, " They are obnoxious and they won't listen." I said
"then someone should fire their asses. There are a lot of people out of work who would love the job and do it better than them." At this point, Mr. F-bomb points out my language. I said, "I did not throw the f-bomb and there are no children around." There wasn't anyone else around to hear me. He says "there were no kids when I said it." I am just about ready to go off on this kid when the woman who was behind me on line walks
out and is like "Uh-oh." I said to him, " you had no idea who was coming out that door. I usually have an 11 year old right next to me." I told the manager again that all of this was absolutely unacceptable and walked away. She is obviously not capable of being a manager and kids these
days are taught nothing about proper work ethic as far as I can see. I watched six lifeguards sit
in lounge chairs and read and BS last Sunday while 1 guard watched the whole pool with 2 empty lifeguard chairs and a bunch of kids waited to go off diving boards because none of the guards would walk down and sit in the chair by the boards. The manager of the pool was walking right past them sitting there too. Unbelievable. I got up and said something and they said they were going down in a minute but they all sat there doing nothing and getting paid and our pool
is very close to going out of business. Hmmmm. I wonder why. The kid Tim hired to work with us
last year showed up hung-over on his first day. He was 18. He did not know what even the simplest of tools looked like, could not remember anything he was told, and continued to show up
hungover. He joined the reserves. Boy I bet he's getting a rude awakening now. I don't know people, they say these kids are our future and I am pretty nervous about that from where I sit.

Too many fallen soldiers in the MM war

2009-08-01T05:38:00.001-07:00

This past week, I learned of two members of the myeloma listserv who have passed away, as well as an allo patient whose blog I have followed for some time. I have had personal conversations via e-mail or blog with all of them and I am pretty darn
bummed out. These folks were good people. One was a 59 year old woman from Texas. I just
read things written by a few gals who saw or spoke to her shortly before she died. Unbelievably sad. Another was a cardiologist from NY whose dad died of MM some time ago. His dad
was also a doctor as is his son, daughter, son-in-law and his wife was also in the medical field.
All that medical experience kept him alive longer than he would have been without it, I'm sure.
This was a great man who gave me some very good advice when Tim's transplant failed and taking his advice is, I believe, a major reason why we made a treatment decision that was the right one for us. The third is Andre, who had an allo transplant from an un-related donor and succumbed, after a helluva fight, to complications. He was a brave, funny, feisty, larger-than-life kinda guy. It is somewhat of a comfort to see how long people have lived with MM now when I read the "honor roll" that the listserv participates in
but it always weighs heavy on my heart to hear of these losses. There is no way to know when or
if we will be in that position and words just don't seem enough when you want to do something to help these folks. I just hope that this longevity is going to be enough to save folks who have MM now as progress is made with treatments. There is definitely a bonding you have with those who walk in
your mocassins. Tomorrow, we are driving out to PA to visit a couple we have remained friends with since Tim and Jim transplanted together in 9/07. We have stayed in touch with 3 of the patients that went through it with Tim. I care deeply for these folks. We support each other.
The old cliche is true that you just can't understand what someone is truly dealing with unless
you have been or are there now. There is a trust I have with these people that would take years to develop were you all not in this same pressure cooker together. I have met so many people on the internet since Tim's diagnosis
and the caring that comes across these computer screens is real and heartfelt. Perfect strangers
who cry, grieve, but also laugh and rejoice with folks from all over the world. It's powerful and it
is a lifeline for patients and caregivers as we struggle to deal with life's uncertainties brought on by MM. I know that with every patient who has gone from us, a doctor somewhere has learned a little bit more about MM and hopefully this moves us toward a cure. God bless all of us MM patients and families and I pray that these docs who say they think we will have a cure within
the next 10 years, are right. Sooner would be even better.

I'm baaaaack.

2009-07-27T09:10:00.000-07:00

Well I have been sans computer for about 2 weeks. I had a virus hit me and thank heaven
my Dad's friend was able to fix this without me losing all my family photos and videos which
I foolishly do not have all backed up. I am such a computer illiterate, it's not even funny. I don't really know how to back them up. I did it once but it was 3 years ago.
I have to get on the ball though as this was a close call and I was sick with the thought of losing
all those pix. I realized that I spend way too much time on this computer though and I have
to start curbing that. Between the time I spend on it and Olivia too, Tim is ready to heave this
thing out the window. The constant tap of the keyboard is irritating to him. I guess it doesn't help that the housework and paperwork is still not caught up so I have to start setting limits
for myself. Summer has been busier than I expected it to be. I feel like an unpaid
taxi service for Olivia and her friends. I never accomplish all that I want to and a lot of it is just
plain old procrastination. I really don't want to do paperwork and filing so I do everything else
I can think of to avoid it. The front beds are weeded but you can't see the top of my diningroom table right now. All in all, the summer has been good(cooler than usual which is great for all of us who are sporting estrogen) with the exception of the fact that
the same brat that was giving Olivia trouble last year is in her day camp this month and has started the whole thing all over again. I'm not surprised since her mother is in such denial and
did not do a thing to stop it last year. It seems everytime Olivia excels at something, this girl gets jealous and finds some other way to take her down. Last year, this girl could not compete with Olivia in softball pitching so she started trying to convince other girls not to play with her
and telling them secrets and all that. 2 mondays ago, the recreation camp went bowling and when I went to pick Olivia up, I saw that she beat this girl 2 out of three games and old Kathleen
was not happy. SOOOOO there she goes again spreading rumors and telling girls that Olivia
had no problems with not to play with her anymore. What a pain. Girls are just ruthless sometimes I tell ya. With boys, they beat the crap of of each other and it's all forgotten 10 minutes later. Some of what I've seen with girls like Kathleen makes me wish that were the case. The backstabbing and mental stuff is just nuts. Knowing that the parents are no help, I went to the camp
counselors. They spoke to the girls involved. I am tempted to bring this up again with the mother but I know this time I will not have the patience I did last year while I listened to her
bury her head in the sand and claim her child was just not capable of any of this. It's a shame
that one girl can go into a group of friends and just divide them up everytime like this but when
there are no consequences at home, she is not bound to stop anytime soon. Enough of that. Anyway, Tim is still swamped at work and exhausted because of it. Our next vacation will be a much needed one for him. Aren't they all. We'll head out to VT in August and I'm planning an overnight or two on the way up to try to get some new adventures in instead of spending the whole time at the same old place we've been so many times. I'd like to get one more long weekend in at the end of August somewhere too as the older
Olivia gets, the more homework she'll have, and the harder it is to pull her out of school for vacations. Tim will go have labs drawn before we go to VT but we will not see the doctor until almost 3 weeks later. He just does not want to deal with this until afterwards and I can understand that. On the one hand, it could be good news and you'd like to know that but on the other, if it's not too good, he'd rather go on vacation not having to think about it then. So that's the update. Really just a lot of the same old stuff. As always, life is what happens while you were making other plans.