Warning:major vent alert!!!

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

Paradise found

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

Happy April fool's day

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

The downfalls of an acoustical bathroom

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

A report from the "chain gang"

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

Velcade Day

Today Tim gets his first Velcade treatment. His numbers, which had been pretty stable since
his SCT, have now started to move. No big jump, but they are going up. We knew this would
happen eventually but I must admit that his being off chemo these last months has made our life
as close to "normal" as it's been since this all began. I am not looking forward to all the time we
will now have to spend in his doc's office. He needs a CBC and has to see the doc. everytime he
has this infusion and his doc. is always behind schedule. I still feel guilty complaining because of course this is much worse for Tim, but I guess I do have the right. I just hope it works. Tim has decided he will probably do the mini-allo and his doc. once again told us that he may not even be a candidate for one if they can't get his numbers low enough.
If the velcade does not work, we are really in a pickle. On a non-cancer note, we are nearly done
w/the apartment renovations. The kitchen cabinets went in on Sat. and I showed the apartment
3 times and all parties were interested. There is very little undeveloped property in our little
suburban town in Bergen County, NJ but this 2-family we bought overlooks a 3 acre nature
preserve with a river winding through it and the young couple who we chose is in love with the
place. The guy can't wait to pull a trout out of the creek. I know they stock it but I secretly thought to myself that he may catch nothing more than a plastic bag. Tim, Olivia and I did watch 2 red-tailed hawks there just a few days ago though. Not a common
sight in these parts. I am relieved to be almost done and to have it rent so fast. It's a load off
my extremely overloaded mind. Tim's flooring business is very busy. We thought he'd be a little
slow in Jan. and Feb. as is the norm but he is swamped and that makes it very stressful for him
to be trying to finish the apt. on top of all his business responsibilities. I wish we could hit the lottery. I hate the stress and time constraints he has. If ever there was a time you did not want
your life to be governed by financial matters and health insurance, it is when you are faced with
an illness and you really want to spend all your time showing the world to your 9 year-old. There
was this show on TV about how winning the lottery ruined these people's lives. Boy, I am convinced we could make a good run of it if we were given the chance!!! Oh well, back to reality.
And right now that reality is a sink full of dishes and a doctors appointment. RATS!!!

Tim's birthday

Superbowl Sunday fell on Tim's 44th birthday this year. We had a nice day. Took our
daughter and her friends bowling and went to our friends' superbowl party. It's hard to
believe how much has changed since his b-day last year. We took our parents to a Toby Keith
concert. It was our daughter's first concert and Tim's dad's first(at age 70). No worries. Just
good times. I suddenly remembered something that did happen last year that I realize was
because of his then undiagnosed MM. His lips were chapped and his bottom lip split. The next
morning his lip was blown up like the guy who plays Bubba in "Forrest Gump". We were all
joking him about it and calling him names. It was all funny at the time but I now know this
was because he was really sick and had low white blood cells. It made me so sad to think
we were mocking him so bad and he was so sick and we didn't know it. We just got word last
week that a guy we know lost his battle with colon cancer. He was only 45 and has 3 kids,
the youngest being just 4 or 5. I didn't want to tell Tim but I myself hate to be patronized
and I knew he'd find out from someone else and figure out that I'd kept it from him so I
told him. It's impossible not to think about the what "ifs" when faced with this kind of reality.
When cancer touches your life, you feel like it's all you see or hear about. I am always hearing
of someone being diagnosed, dying, battling it and the worst stories are the little kids. When I
could give to charity, I always gave to St. Jude to help save those kids and kids everywhere.
Tim thinks he is going to do the mini-allo transplant. We are very scared but with the auto
not working, the docs feel this is really the best thing to do. They feel the failed SCT is not a
good sign. He will probably start Velcade in about 2 weeks and get his numbers down as low
as they'll go and then onto the mini-allo. I pray things go well. This is an excruciating decision
but I guess we are kinda more afraid not to do it when the docs talk to us about his case.
For now we are very busy renovating the apt. and running his business. I wish we had less
stress in our life but we just gotta get through all this. We hope to sneak in a quick trip to
Disneyworld before the real tough stuff starts. We'll see.