Sometimes nice guys(gals) don't finish last

Tim and I are coaching our daughter's softball team this year. We assisted for 4 years prior
which was not easy as the head coach was my neighbor, not a good coach, and defensive
as hell if I(a lowly woman) ever made so much as a suggestion. It got to the point that we really couldn't stand being around him, he was so obnoxious. His daughter then started to treat Olivia very badly as Olivia was a better pitcher than her and that turned out to be a
real pain too. So this year he stepped down, I took over and put his daughter and him on
the other team. GOOD riddance. Unfortunately the coach of the other team and I got together
to draft the 2 teams and it's a long story but he knew a lot more of the girls than I did(they come
from different elementary schools and ours has a lot less players than theirs) and he stacked his
team with all the strong players he knew and lied to me about the skills of the players I wound
up with. All the while, we were saying we could do this fairly, it's all about the girls etc. I was pretty disappointed with this guy. What a schmoozer. I was ticked at myself for falling for his big "nice-guy act" too. When will I ever learn? Well a woman who runs the softball association and coached many of these girls in the past caught this
and went to town with him on the phone several times. She knew exactly what he and his assistant coach were up to and she took 2 weak players off my team, gave them to him and took
2 girls off his team and gave them to me. Well, he still was no idiot, as he knew there were issues
with these 2 girls too. 1 decided not to play after all as her schedule was too full and the other used to play baseball with the boys, she's so good but struggles to hit cause she is too choosy
about pitches and swings for Kentucky everytime. ANYhoo, we had a scrimage with them a few weeks ago. Tim had to stay home with Olivia as she had her strep recurrence and I went and
coached by myself against this team which is coached by a total of 6 men incuding my jerk
neighbor. It was the boyz against "lil 'ol me! Bring it! I felt compelled to wear my Harley Davidson shirt to the game just to bring out the TAWANDA in me so I did. Well we beat their butts. At one point one of his
girls asked if they were winning and he said "this is a scrimage, we're not keeping score."
He was full of bull dinky. He was darn sure keeping score. We thrashed 'em. I tell ya, I could
have bought every one of my girls Jonas Brothers tickets, I was so pumped. NOT that I let
this show. ;o) So yesterday was our first game. It was time to play ball for real. Olivia got up
to pitch with no warm up and I also used another pitcher whose parents now bring her
to the same lessons I get for Olivia. I have worked really hard with my girls and have a lot of fun with them too. Well I could buy my kid a new car I tell ya. That brat that
was being so mean to her last year(the neighbor's kid) got up to bat. Olivia struck her right
out!!!!! THAT'S MY GIRL!!!!!!! Then we proceded to beat them again and this time, it counts.
YEE-FREEKIN'-HAW!!!!! Honestly, I love coaching these girls. It's all about building their self-esteem and having fun. Nothing makes me happier than to see one of my poorest players get
a hit and stand on 1st base grinning ear to ear. I was even helping the pitcher from their team. But I cannot say that there was no pleasure in what happened yesterday. They coach
their girls so intently. They HATE to lose. Hey we all like to win but I just expect my girls to
try their best and I am no nut case or sore loser. This was just a situation where 2 men tried to
do something really unfair(and against the rules), got caught, and then got their come-uppance.
Man it feels good!!! GIRL POWER!

Back from Chincoteague

Well, we finally got away on a vacation. The last 2 were scrapped due to illness and this one nearly was but we sqeaked it out. Olivia began having rashes every night even on the second
antibiotic so the docs made me bring her in the morning we were leaving for Virginia. We will have to consult with an allergist soon. The
hospital was an hour away from where we were staying and I was pretty nervous about that.
All three of us have drug allergies now and I am all too aware of how dangerous they can be.
However, you can not leave strep untreated. So, on top of the antibiotic,
I wound up having to treat her with benadryl or zyrtec while we were down there and take
her off them to give her dramamine for the car trips. OY!!!!! I felt bad for her. The benadryl makes her really tired and a bit grouchy which is rare for her. Despite this, we had a wonderful
time. Unbeknownst to me, they round up the wild ponies for a vet check this time of year and
we got to see this round up from a great perspective. At one point, they ran right by on
a sandy path just 8 feet from us. AMAZING. Olivia got to see ponies everyday, a brand new foal take
its first steps and visit a place from right out of the book she just read"Misty of Chincoteague."
I got to relive a piece of my childhood and we all had a great time. The people are so friendly
down there. There's just nothing like the south for friendly, warm folks. Makes me not want
to come home sometimes. Chincoteague has retained its small town charm. The locals all know each other and the prices of things
had me stunned, they were so cheap. I am so used to going places where the prices are insane. So many people around where we live have so much money and they're willing to pay these ridiculous prices
for t-shirts and stuff. I can't remember being at a tourist location and being able to shop and
eat as reasonably as this. We did not want to leave this little haven yesterday. With the exception of the lack of nearby healthcare, we could get real cozy in a place like that. Now,
it's back to the old grind. I am so grateful for the terrific memories made in these last 5 days though. Magical stuff.

Can't judge a book....

OK Ya GOTTA check this out!! I apologize for my computer illiteracy. I know my blog is probably a shoe-in for the most boring blog in myeloma history. I don't know how to get
links on here or pictures but I just saw this on another myeloma blog and it gave me goosebumps to listen to this woman sing. If this does not prove just how much people judge
by appearances, I don't know what does. The audience and judges took one look at her and wrote her off. They laughed at her before she even began.
She opened her mouth and SHAZAM!!! A cinderella story for sure.
Do a search on Susan Boyle-singer-britains got talent 2009. You will see a youtube
come up on her performance on this show. I'm willing to bet this woman will become famous for this.

Keeping me on my toes

Well, it was right back to the pediatricians' office again today. Seems Olivia has developed
an allergy to another antibiotic. YIKES! She had a reaction to a penicillin drug at 4 and has
used another drug safely ever since. I knew there was a small chance of cross-sensitivity with
this other drug and would only give it to her after school on school days just in case. Despite
using it about 4 or 5 times now in the last 6 years, last night she broke out in a Trifecta of
rashes. She had a sunburn type rash all over her trunk and a prickly rash in the middle of
her chest. This was accompanied by a fever and my first thought was scarlet fever, which
can happen with strep. This morning though, I could see hives were also present in the mix.
Poor thing was itching like a monkey. I made a doc appointment and gave her Benadryl.
My first reaction was "for crying out loud, isn't anything gonna be easy in this family?"
I really get ticked at times at the constant medical things going on. Before Tim's dx, I had
years of my own issues so it really feels sometimes like we never get a break but I have to stop
when my mind goes there. I take a breath and put things into perspective immediately.
It's not great to have drug allergies but look at all those kids, my niece is one, that have nut
allergies as well as other foods. Those parents live with constant fear. No one is gonna give
my daughter penicillin or omnicef at a birthday party and put her life in jeopardy. Sometimes
when I am reading some blogs that I follow, I link to other blogs and this week I stumbled
onto blogs about kids with neuroblastoma. Some have died. I cannot sit here and go to pieces
over some freekin' hives. The misery these people are living every second of every day had
me crying at the computer yesterday. So our wonderful doc made a plan to use something
safe that will put my mind at ease while we are on our vacation and we will hope it clears this
strep effectively. No biggie in the big picture of things. We make adjustments and we keep moving on. And we remember all kids with cancer, and their families, in our prayers at night.

Making memories

Well, if I can get everybody well, we are going to head south to Chincoteague Island,
Virginia on Wednesday. Tim still has the remnants of a 2 week old cold he can't shake
and I had to pick Olivia up from school today. Seems the strep she was just treated for
is back just 3 days after finishing the antibiotic. I was at the mall doing some (spoiler
alert) Easter Bunny shopping when I got the call to pick her up. We have missed our
last 2 planned vacations due to the flu and colds and now I am trying like heck not to
let the wheels fall off this one. When I was a kid, I loved horses. Misty of Chincoteague was my favorite
book and I think I still have it floating around here somewhere. We went to Chincoteague
twice and saw the ponies swim across the channel. I remember it as such a nice, small towny
type of place and have wanted to bring Tim and Olivia there for years. I rented the movie of the
book and we watched it after Olivia and I read two of the Misty books from the library. I am
so excited to share this with Olivia, the books and the trip. I am an avid reader and I also love
how having kids is like getting to be one yourself all over again. I want to make some memories
with Olivia like I have from travelling the country with my family. It won't be long at all until
she would rather be with her "peeps" than go travelling with her parents so there's no time
like the present. We have not given in to the temptation of getting her a puppy so we are free
to come and go as we please. Tim's business is no where's near as slow as most of the wood flooring guys around here, but it is off a little so that may help us this summer. Normally,
summer is the busiest time of year for him which stinks as that's when Liv is off school and Tim
is a beach bum kinda guy so he hates being so booked all summer. This year, we are just planning our vacations and the work will have to fit in around them instead of the other way
around. I'm excited. I'm trying to stay on top of all my paperwork this year so I can go away
with no worries of what's waiting at home for me. Well, back to playing nurse here. I actually
had one of Tim's nurses try to convince me to become one. I've been mistaken for one about 30 times in the last 2 years. I could not do that for a living. I have all the respect in the world for those that do, or I should say -do it well. I am just too much of an empathizer. It would tear me
apart every day. The "nursing" I do is out of necessity, not choice. I do it cuz I gotta. Well onto
Easter. Spring has sprung in Jersey. That means crocuses, daffodils and freekin' rain. We actually had snow flurries yesterday. Someone's idea of a joke, no doubt.

How ya feelin? You look great!

There's a discussion going on the myeloma listserv right now about people's reactions to you
when you have cancer. Some people are so sick of hearing these cliche statements. The "you
look great" one can seem a little patronizing when you know you look not so hot. Tim and I spoke
about this awhile ago. Tim is such a laid back guy and it would take something pretty over the top to find his cranky side. He knows that people don't know what else to say. He never gets bothered by it. I really don't either. I do sometimes wish we had the chance to forget about it a bit when we're out though and I get concerned for Olivia when so many people come
up to us and ask how Tim's feeling but as Tim said once, these same people may think we'd
be bothered if they didn't ask. (we wouldn't) The one thing I found interesting though after his diagnosis is how many men are afraid for their own health and started quizzing Tim about what
symptoms he had and how they found out he had this. You can tell by the look on their face and the questions they ask that they are concerned for themselves and not Tim. One of Tim's old high school chums totally cornered him during a party we were having with a slew of questions
and that got me a little annoyed. He would not let him go till he got the answers he
wanted and this was at our annual Christmas open house and I know Tim would have liked to
have a little normalcy that night. Then there was the time a guy really stuck his foot in his mouth and said something about dying and headstones and it came out like he was saying Tim
was headed for that and I just winced. There've been plenty of times I've wanted to draw
something I've said back in but this was a time I wished I could've taken someone else's words back. In the very beginning, some people were so uncomfortable that they avoided making eye contact with us. This is pretty painful, I must admit. It's like you've just been totally booted out
of the "normal club." When Tim lost his hair, he would walk down with me to pick Olivia up from
school and I thought this was so great. Chemo baldness is like wearing that scarlet letter "C" on your chest especially when everyone knows you with a gorgeous head of hair. Sure it bothered him but his little girl was more important. There have been so many times when women have spoken to me or asked me something and I just know that the
wheels are turning and they're thinking this could just as easily be them. Many times, as I have said, they say "I can't even imagine" and leave that sentence hanging and I say in my mind, NOPE you sure can't. Unless you are going through this, you cannot know the pain, fear, anger,
sorrow, fatigue, overwhelming responsibilities. You also cannot know what it is to actually hope your husband lives long enough to see our child grow up when you signed on for the long haul. Gray hair, social security, saggy body parts. I want all that with him. Hell I'll even take erectile disfunction. Bring it. I've got the rocking chairs on the porch already and I want to be there with my "old man."
I sit in the waiting room of the oncology room with a bunch of 70 and 80 year olds and wish we
were old. I don't want my husband to have cancer in the prime of his life. Our 10 year old should
not be dealing with this DAMN-IT!!! But people also don't know the love, support and
caring we have found. We have made friends with some lovely people. I have met people on websites and blogs that I would love to meet in person and have such respect for even though I've never met them. I have felt stronger mentally than I have felt in years. Even after 20+ years, I can
honestly say I did not know the extent of how brave and courageous my husband is. He amazes me every minute of everyday. My daughter is an incredibly strong and warm little person and I know that
despite this awful thing that is happening to us, God's love is shining through us as well as people around us. I have had complete strangers want to do something, ANYTHING to help.
Everytime I find myself getting disgusted with people or life, some miraculous thing comes along
and restores my faith. I watched Michael J. Fox on Oprah today and his attitude is really something. He said that with every loss, there is also a gain. Ain't it the truth. We have learned so much, been moved so much emotionally. Our whole perspective of life has changed. We appreciate things others don't even take the time to notice. As a person who was always planning
for that someday, when the house is done, when Tim retires, etc. I have been forced to live for today. I am taking cues from our 10 year old daughter and realize she has as much to teach me
as I have to teach her. If not more. So my new motto is going to be to live like a child(as much as
possible anyway.) I think they can truly live in the moment as few adults can.

The hard questions

Ever since Tim's diagnosis 2 years ago, I have dreaded the day our daughter asks me if he is going to die. 4 nights ago, it happened in a roundabout way. I have noticed in the last few weeks
that she has been a little clingy with me. It is not that noticable because we are a very close and
demonstrative family and she and I have always been practically "joined at the hip." She had asked me several times though if she could sleep with me or if I can lay down with her at bedtime. Then, Wednesday night, it happened. She came into my room just a few minutes after
I tucked her in and said she was upset because she had bad thoughts in her head that wouldn't
stop. I asked if she wanted to tell me the bad thoughts and she said that she was thinking about
me and daddy dying. My first lightning thought was "CHOOSE YOUR WORDS CAREFULLY
DENISE!" So she came over and lay down on my bed with me and I said, "Liv, noone knows when they are going to go to heaven. It's out of our control. Since there is nothing we can
do about it, you have to try not to think of things like dying. It just makes ya feel sad and ruins
today. Nana used to always tell me, 'Let go and let God.' That means when there is something bothering you that is too big to handle or out of your control, you have to turn it over to God and
let him worry about it." I told her that "daddy is doing really well now. He is in remission and things are going great. Try not to think of these things and replace them with happy thoughts."
I ended by telling her, as I always do, that she can talk to me about ANYTHING and when something is bothering her to let me know instead of letting it go on and on. I validated her feelings by telling her that her life is a bit harder than a lot of kids because of this situation but that there are a lot of kids that are in the same exact situation and she is not the only one. The next day I went to a support group meeting and met Robin Tuohy(from the IMF), whose husband was 36 when dx'ed 9 years ago and they have 2 young kids too. I told Olivia of them when I picked her up from school as well as the dad that I met there who also has a 10 year old girl. I just want her to
know she is not alone. She has done an unbelievable job of handling this and I told her that but
I thought to myself, every kid has those fears and nightmares as a child. I know I did. It must be
so hard when you have a real reason to have that fear as Olivia does. NOT fair. I know that if the day hasn't already come that she thinks to type in myeloma on google, that it will
happen some day. I don't bring it up because I don't want to put the idea in her head. I know the first time I did it and read things like a 2 year life expectancy when diagnosed in stage 3, I lost my mind. As I said in my last post, there is no getting away from the "C" word. In Olivia's case,
there are 2 girls being treated for cancer in her grade(5th). A guy I knew many years ago, died
of colon cancer last year and his daughter is in Olivia's class and the 2 of them have been working
on a project together in school. I have to wonder if this is what caused this to happen now. How could Olivia not look at this girl and wonder if this is going to happen to her too. I had several people tell me I should lie to her if she ever asked if he could die. I don't agree with that. I am always honest with her. She knows she can trust me. When we go to the doctor and she asks me
is something will hurt, I will tell her that it will for a quick second but not as much as getting her
ears pierced and she can remain calm knowing that I would never lie to her. I do know however
that Tim can be here with us a long time and to tell Olivia that he could die any day would ruin years of her life that don't have to be ruined. We are trying to salvage her childhood and we can't
let her live with constant fear either. So I decided the best way was to be honest without telling her something that would end her happiness forever. The truth is, I don't know when any of us
are passing on. If this horrible event that happened to Natasha Richardson and her family does not drive that point home, I don't know what does. Life and health are fragile. She starred in a movie called "Parent Trap" that we have on DVD and have watched many times. Olivia heard about it and said she never wants to try skying now. I said to her, "Liv, that was a freak accident. If we take you skying, you will wear a helmet. It's not that certain sports don't have
some danger involved but you have to weigh being cautious with allowing yourself to have a
life. You can't let fear keep you from living." This is a lesson I'm still learning. Fear has been the
true "F" word in my life. I've always said, having kids is all at once the greatest and the hardest
thing. They bring you so much joy but boatloads of worry and sometimes heartbreak and pain too. You just cannot protect them from everything bad in this crazy world no matter how
hard you try. I'm just trying to give her the "tools" to cope. I reminded her that we are not as
devastated over Sophie(our dog) now as we were when she first died. Not that you can compare
a human loss though she was such a part of our family. But I wanted her to know that you can heal from heartache. I promised her last July when we lost her that "it won't always hurt this bad." She needs to know she can trust what I say and unfortunately, life is all about picking yourself up, dusting yourself off and forging on.