Caution: parent shamelessly bragging about kid

As I think I have said in a former post, I try very hard to find things to be grateful for to try to
save my sanity(not sure that's working) and keep the old blues at bay. Today I must brag about
our kid. She is about to graduate the 4th grade and go on to an upper elementary school. It seems like not long ago at all that we were walking to her first day of kindergarten at this school.
It goes by so fast. Today, Olivia was chosen to be a special guest in the speech class to give the
speech students a chance to show what they learn there. The speech teacher came up to me
after school and told me she was a joy and she so loved having her there. This is the second time this year that teacher has complemented Olivia on her behavior with other kids and told me how much she likes her.
At her teacher conferences, they always tell us that Olivia is well-liked and a big help to other
kids. Her teacher this year actually told us that it amazes her that a 9 year old(10 now) and an only child at that is so caring and lacking the self centeredness that most kids that age
and only children especially have. She told us how ALL the boys in the 4th grade treat her like she is their sister as they are so comfortable with her(not always a good thing.) My sister told me after taking care of her for the bulk of
the 2 weeks we were gone for Tim's transplant that she loved being with her and playing mom.
She has no kids. She told me that Tim and I have definitely done something right with her. Not to get too morbid but she and her husband are childless by choice and she is the executor of our
wills and in charge of appointing someone to raise Olivia if something should happen to us. I never thought they would be interested and they told me that they don't care who we prefer, they're taking her! She is a cool kid. She is smart and was chosen this year to get a proclamation
from our mayor as one of the top 3 readers in her school. This girls just knocks us out. Thinking
back on all the times teachers in this school have complimented her just makes us bubble over
with pride. Being smart and good in sports is nice and all but raising a good person is so important to me. Today, and everyday, I thank God for blessing us with this easy-going,
adventurous, compassionate, smart, fun-loving and unbelievably cool little girl. There have
not been many times in my life that I have felt "lucky" but getting this kid was a like hitting
the lottery.

Life on the roller coaster

I did not want my last, very negative post to be hanging out there too long so just a quick update. We have felt for a long time that we are on a roller coaster and it continues to be
that way but some days end on a very good note and that brings forth a lot of gratefulness
and picks you up out of those dark spots. We had Olivia's birthday party yesterday at
a Build A Bear place in the mall and this was a good thing. The girls had a ball and everything
went super EXCEPT in the middle of the party, I get a call on my cell phone that there is water
leaking through the living room ceiling in the apartment in the rental house we own. It's always
something. I thought after three months of working on the upstairs apt. and renting it that
we could coast for awhile. Not to be. We got phone calls within 2 weeks about the new tenant
when he showed up with an ear-splitting Harley we were not told about and woke up the other
tenants and half the neighbors starting it up at 6 AM. That got ironed out and then we had another problem with him. Obviously, he did not know he was dealing with a stressed out,
sleep deprived, hormonal, desperate housewife. He does now. I told him that if he thinks he's gonna add more grief to my life, he is mistaken. He either shapes up or I'm tossing him out.
He chose to shape up.
Then the downstairs tenants have parents
who live out of the country who are ill and they are moving back home to care for them. Another
apartment to rent. So luckily this roller coaster has its ups. The apt. rented immediately and I
believe we will like this situation better anyway. I am learning to try to "roll with the punches"
more and more with all these problems the last few months have thrown our way. They say you learn the most in the bad times of your life. I just wish God didn't think I had so much learning that had to be done. But the best
news lately was the telephone consult we had with a top myeloma specialist last night that has
us feeling more hopeful and confident than we have felt in a long time. Tim has made up his mind
not to have an allo transplant now. We intend to stop the Velcade now that it's done its job and
the neuropathy has begun anyway so the timing is right to end it and we will pray that he will
be able to ride out a nice remission from the great response he had from it. We have been tied
up in knots ever since we learned his sister was a match and we both feel like a weight has been
lifted off of us now. I think that Tim really felt in his gut that he wanted to at least try to see if
he could get a remission and have some quality time before doing something that is still so
controversial. I have always had the utmost respect for anyone brave enough to do the allo
and still do. He may even do one at a later time if it becomes necessary but for now, he feels OK
trying to use meds because he responded so well to them so far and this doctor had that very
same opinion when he looked at Tim's history and lab reports. I am grateful for the many "ups"
we have had in these last few months. They have gotten us through the really rough spots. Our life has been like being in a boat and getting tossed about. I intend to just keep on paddling
one day at a time. I guess this wasn't such a "quick update". I can ramble with the best of them,
can't I?!

Warning:major vent alert!!!

Well I mentioned in one of my blogs how we've had a real streak of bad luck these last few months and I had hoped that streak was on its way out quite some time ago but, alas, it is
still going strong!!! Since about the 2nd week of February, it has been one thing after
another. Luckily, most of this has not related to Tim's health but it has been extremely
stressful anyway. I have always had a low tolerance for people who are selfish,
obnoxious and inconsiderate but being faced with what we have been faced with these
last 14 months, my tolerance for BS really is non-existant. The phrase, "you find out who your friends are" is very true and I was not surprised by that but it goes even further than that.
You realize that some people just have no conscience at all and the levels some people will stoop
to just stuns me sometimes and I guess I didn't think I could be surprised by that anymore. I have realized too that having toxic people in your life is not a good idea and drags you down. I can usually take quite a lot and I certainly do not look for trouble but after all the
stress and sleep loss, my fuse has shortened considerably. My neighbor found this out the hard
way. Since moving in 4 and 1/2 years ago, he has woken us up countless times early in the morning on weekends renovating his house. Very loud power tools outside at 7 AM on Sunday mornings
doesn't fly in our neighborhood where the houses are so close together. Several neighbors have
been mad about this but no one said anything. Cut to a few months ago when he was still doing
this after Tim's transplant and he began loading a dumpster at the crack of dawn one Sunday,
waking us all up, and I let him have it. I must have looked like a crazy woman. I threw clothes on
but must have been a sight. I lit into him so bad, his face turned white. Before you think that I
am a crazy woman, this man had also said some inappropriate things in the past so he had it coming and he was not someone I want to be chummy with anyhow. He apoligized profusely
and is civil to us but his wife is ticked and that's fine. I just don't want jerks in my life anymore.
We just had someone do something so incredibly low to us concerning Tim's business and the
anger that I have probably has my blood pressure soaring. The way some people will stop at nothing for a buck is sickening to me. I have to keep telling myself that what goes around comes
around and that I am glad that Tim and I are known to be honest and trustworthy people,
but I gotta be honest, all these people who screw everyone in their path are healthy and my husband, who would do anything for anyone(and does) is sick. Hardly seems fair. I know it is
certainly not my place to decide how anybody's life turns out but the injustice of things sometimes is really hard to swallow. Very depressing at times. Well to try to end this on a good
note, we have also seen some real caring come from people and when that happens, it renews
your faith in mankind. We have to increase our time with the kind of people we want to be around and try to limit our exposure to the others. It's definitely a quality of life decision.

Paradise found

Well we just got in today from sunny florida and it did live up to its name, the sunshine state.
We had terrific weather the whole 12 days and I can honestly say this is the first real "R and R"
we have had since Tim's diagnosis. We have not been away from home for that length of time
since our wedding/honeymoon and a long vaca like that really helps you to leave
your "to do" list behind. Disney was magical and it was terrific to spend some time in the Keys
with relatives. Perfect setting, great company, real "lower your blood pressure" type stuff.
Only downfalls: Olivia looks like she has the measles as she is just covered with bug bites and I
came down with a cold for the Key Largo leg of the trip that Tim may be getting now. I'm grateful that is all. The flights were fine. I can't say I like to fly and I definitely get sweaty palms
especially during take-off but I did really well and Olivia loved it and wants to fly everywhere now. Unfortunately we have to get back to reality now. Tim has to decide about an allo transplant
and his doctor is now urging him to consider a full allo. Everytime we think we have a plan,
we get another option/suggestion thrown at us and it leaves us even more confused and over-
whelmed. This myeloma business is just one big gray area and it really stinks. It's hard to make
any kind of educated decision because the field is constantly changing and the results are not
necessarily all in on the modern treatments of this disease. I feel that the protocol Tim has already been through will be changed very soon(or already has been) and I'm frustrated with the feelings
of "wishing I knew then what I know now" as far as his induction therapy and
auto transplant goes. Can't go back. Oh well. Back to the world of errands, housework and
doctor's appts. Rats!!!

Happy April fool's day

Today marks five years since Tim quit his "day job" and became officially self-employed.
I think it is a good luck day for us. We just got the results of his second round of Vel/Dex
and his numbers are so good that if I was not so tired, I would have danced in the doctor's
office again. His M-spike is .43 and the doc actually feels this is a high estimate when his
other counts are taken into consideration. His IGG is 700. We were gonna go to Disney for
a week after this month's treatments but Tim wanted to extend it to 2 weeks so we can go to
the Florida Keys and visit his Aunt and Uncle and the doc told us to do whatever we want.
He said his numbers are so low and he responded so well that he is not worried if we mess
around with his chemo schedule to go on vacation. Yippee!! Time to blow this place for sunny
skies. I have not flown though since 1985 so this should be a hoot. I swore off the friendly
skies after a rough take-off going to LA and never flew again. We drove last time we went to
Disney but we are too darn tired to do that now. Tim will be on a Dex crash when we leave,
unless his Doc will let us nix or decrease the dex that one time so he is not so tired and I just
don't sleep well and am exhausted all the time. We lose so many days by driving, I just decided
to deal with my anxiety and fly. So if any of y'all are flying to Florida this month and see a
guy in a mask next to a woman doing yoga chanting, THAT'S US!!! My daughter will be the
brave one next to us. Tim is looking forward to some umbrella drinks at Jimmy Buffet's place.
Can't wait!!!

The downfalls of an acoustical bathroom

I always hated Easter as a kid. Sounds strange but for years, we always seemed to come
down with the stomach virus every year at Easter and I came to dread the holiday because of
it. I've gotten over it though some of those memories remain. True to the Easter theme, Tim has decided to
"resurrect" this tradition. Last night as I tapped away on my computer, he came home from doing
estimates, ran in the back door and and up the stairs, into the bathroom and the distinct sounds
of Easters passed echoed throughout our house. When we remodeled our house, it never dawned
on me that making a big bathroom and covering it with tile and marble would essentially make
it so acoustical that the echo could be heard from all corners of the house. Even the exhaust fan,
which sounds to me like the engines of a DC-10, don't drowned out a bad stomach virus. Our daughter had to sleep in the livingroom and I spent half the night wondering how hard it would
be to sound-proof that darn bathroom. It was a tough night for Tim. I gave him an Ativan and
then a compazine when it seemed the Ativan probably did not stay down long enough. I don't
think either helped much and since he had pulled his Dex all-nighter the previous night, he
was wiped out to say the least. I have been waging chemical warfare all over the house with
anti-bacterial wipes and I hope like heck that Olivia and I do not come down with this. It was
downright violent. If this Easter tradition starts again, I think we will seriously look into the
Jewish faith.

A report from the "chain gang"

Well I have to say first that this last month or so has been one big series of unfortunate events
around our house. I don't even have the time to get into every blasted thing that has gone
wrong but they just kept on coming without end for awhile. I kept telling Tim(and myself)
that who cares if the darn sky falls in as long as his numbers went down from the 1st round
of Velcade, that's all we need. A little aside here. We went out to dinner on Sat. night to not
really celebrate a year since he was diagnosed but I don't know how else to describe it. The sky
actually almost fell in. We had a wicked wind storm come up(heard there was a little twister
about a half hour from here) and a huge light from a gas station fell and hit my car and crashed to the ground. I'm hoping this was the last event. It's just been unbelievable all that has gone wrong. Anyway, today Tim got his results and his numbers look great. His IGG chains are in
normal range for the first time since before diagnosis and all his light chains, the Kappas and
the Lambdas all got on board and did the same thing. For any folks not hip on MM lingo,
basically the fraternity of normal Kappa Lambda ratio is the one you want to get in and Tim's in!!! I will say the hazing process of this fraternity should be outlawed. Melphalan,
Velcade, Dex. Nasty business. But I can really let go of all the cr-- that has happened as long
as this one thing went right. At first I was gonna spare his doctor from witnessing my little
version of the happy dance when I saw Tim's lab report but decided, screw that, he'll get over it, and so I busted into a little "cabbage patch" right there in the hall on the way to the chemo room. Sometimes, you just gotta dance. Anyway, that's the update. We are so relieved that it
is working so well. Hope all y'all out there have something to be thankful for today.
My song of the day today: James Talylor(who else) -The Secret of Life. Very simple but
a good message.