I saw this folder today while feeling down..and it says don't be shy!

Back in early December, my sister was diagnosed with brain cancer at the age of 38. She is only 11 months older than me. With 6 seperate lessions (the largest measuring 4 cm), the pressure in her brain caused her to lose control of her body & mind. They were not tumors. They were within the brain mass & inoperable.

She started Chemo immediately after she was diagnosed. 3 different kinds..1 once a week, 1 bi-weekly & 1 kind of 1ce a month but it had some wierd calculation to figure out when to take it. And that was just the chemo...there are tons of other meds. Antibiotics, blood thinners, mood controlers, things to help her sleep...We needed a friggin flow chart to keep track!

The hardest thing I've ever done in my life was being one of the people who took care of her around the clock for close to 3 months. I completely shut down my business until it was time to work on the LI Lighthouse Challenge stuff and friends & family from my husbands side pitched in to help free me up full time. It wasn't supposed to be like this but I couldn't let complete strangers do it.

We're supposed to be watching our kids play together & coffee clotch...not chasing her down the hall at 3am when she thought it was time to make breakfast! We chuckle at that one now...she refers to it as "when I was retarted". She got her mind functioning back, but she's still not the old Jen".

We've made great headway considering the mortality rate associated with this disease. For New Years we learned that they were already 50% smaller! The last MRI showed that we are down to 1 very small visible lession & she's been tolerating it extremely well...until now.

For the past week she's been extremely ill. Losing weight, and for the first time, losing her hair. My mother didn't have the heart to tell her that it looked very thin today. Her white blood cell count fell through the floor & even if she felt well enough, we're not allowed to take her anywhere. Doesn't really matter since she cant walk 5 ft without becoming exhausted.

In between taking her to dr & hospital visits, work, kids & my new outlook, "do what you want to do before it's too late!"has kept me occupied.(I joined a blues band & we have our public debut on Saturday!) It's good & bad. I feel guilty that I don't have more time to give & about the toll it's taking on my mother. I feel like we got lulled into a false sense of security with her progress & now it's time to wake up & feel the worry again.

I figured some extra prayers couldn't hurt. She needs to beat this so she can watch her kids grow up...& so we can grow old together like we're supposed to.

Thanks for giving me a spot ramble. Feeling like I've pulled it out & put it somewhere else does help.

Nancy, my heart goes out to you, and I am sending prayers for your sister...and for you and the rest of your family.

One of the many things I've been blessed with because of my love for lighthouses is the friendship that comes from that extended group of lighthouse lovers. It helps to talk things out, and it helps to know that there are many arms that wrap around you when there is trouble.

We're here for you.

Nancy, it sounds like Jen is a pretty tough lady and the hope has to be that her toughness kicks back in! She will be in lots of people's thoughts and prayers, as will you and your family.

Nancy, I'm glad that you felt this was an outlet for you, because it truly is. We are all listening and praying for you, your sister and your entire family. No one can know the pain and sorrow that such an insidious illness brings to the patient, as well as to the entire family, except for those who have been through it. God bless all of you and give you the grace to bear this burden.

Thank you all for the thoughts & prayers, I have felt better since posting. I just needed to put it somewhere to get it out of my head. Wierd how that actually works.

Dave, she is tough. She has always been the rebel of the family....oh the stories! I think the effect it's had directly on her brain has hampered it so far but we are hoping that stubborn streak in her lets loose & kicks some cancer butt!

Prayers are comming your way from England too!

We hope that the whole family survives this ordeal! And soon!

My prayers are with you and your family too, Nancy.

"Good friends are like stars.......You don't always see them, but you know they are always there."

Nancy my prayers and thoughts are with your sister and your family. God bless!

Thanks all for the new thoughts & prayers. Hard day today. Sis called me very upset with the hair loss & weakend condition. Time to bring scarves over. We new it was a big possibility all this time, but it's hard since it's the 1 major outward sign of an internal cancer. Basically now you can see it...it's in your face every time you look in the mirror. I'm sure hubby would freak if I told him I've actually contemplated shaving my head so she's not the only bald one. Scarves can be a very IN look!


Tom, a package is headed your way

You know that Bob and I are always here if you need any help or a shoulder to cry on. I know how much you've done for Jen, and how difficult it has been for you. Let us know if you need anything.

Nancy, I will add you and your sister to my prayers. It's hard-I went through caring for my mother-in-law when she was diagnosed with lung cancer. I know the balancing act well...my kids were young,I had a job,husband,home, the works. It puts things in perspective and you realize that above all-God and family are the most important. Take one day at a time and enjoy the good moments. I see you still have your sense of humor-hang on to that to help you through tough times. Don't forget to take a little time for yourself..even if it's just a few moments. It's a hazard for caregivers...you get so wrapped up in your loved one's illness that you forget about yourself and end up wearing yourself out and getting ill. Your sister does sound like she has a lot of strength! Take care and my thoughts and prayers are with you and your families!

Nancy, you and your family will be in my thoughts and prayers. As Debbie said, don't forget to take some time for you.
I am sure others will agree with me when I say, any time you need to vent we'll be hear to listen!
HCS

Anytime... we will all be here and listen. And if there is anything concrete we can do for you Nancy, please let us know!
Wish I could come and help, but it is a bit too far from England!
5lights said: That is soooo impotant! Please make sure you have some time or some person or some poem or some activity ... what ever ... just for YOU !

God bless you and all caregivers!

Nancy,

I want to add that you are in our thoughts as well.

Esther and I (especially Esther) know what it is to be a caretaker for someone. It is very important to help that person but you need to remember to give yourself some downtime so you can be there for the person when they need you.

Hang in there.

Dennis

Diane:
I know you guys are always there. You are 2 of the most helpful people I've ever met! (& very glad I did meet)

This spot is easy cuz I don't need to bug anyone in particular Whoever feels like reading/replying can do so or they can just skip it. It really is weird how putting it in a post is like taking it out & putting it somewhere else, even more so than talking. (Although I did bend Bob's ear a bit last night while driving to & from band practice ) It surprised me how much I felt the load lift after I posted.

And to the rest who stated "take time for you"...I have Bob to thank for that! Joined a blues band! I've sang since 4th grade & went the "get married, have kids" route after high school. Don't regret it at all. I have 3 great (most of the time) kids & a very supportive husband for 17 1/2 yrs so far. (and we still like each other!)

Thanks to a combination of what's happening with my sister & a well timed opportunity presented to me by Bob, I'm finally doing something I've always dreamed of. I'm too old for Idol. They think you hit prime by 30 :p But as Bob pointed out, I'm a youngster in the Blues world! lol

We had a good practice last night & we make our first official public debut this Saturday night! (Nervous as heck & I plan on drinkin! )
I have a younger sis in Law School & she just called to tell me that we have ppl coming from DE to see us play...NO PRESSURE!

If I live through it (and I'm sure Diane will have camera in hand!) I'll let ya know how it goes & maybe post a pic or 2

Let those Blues take your cares away -- at least for a few hours. (And we DEFINITELY want to see pictures!)

In the meantime, prayers and good thoughts will be floating up from Arizona for your sister, you and all those touched by you both.

Joining that "blues band" is just terrific, Nancy. Sing your troubles away - what a great outlet for venting your stress in a very positive way!

I spent time with a sister under similair circumstances. I encourage you to spend as much time with your sister as you can, support her and love her. If there is anything you want to say to her please do it!
My heart goes out to the two of you and my prayers are with you.

The camera is charged up and ready to go.

Now, if they could only settle on a name for the band... :p

Good luck tonight Nancy! Hope all goes well with the "no-name-blues-band"!
But in any case:

Have a BLAST singing (and drinking)

And - yes Diane ... we do want to see the pictures!!!

Anyone got a tape recoder (or whatever is in use these days?) ???

Margaret ~ they have actually been digitally recording their practices...they sound pretty good! I wonder if Nancy has started drinking yet... :p

Not yet, I need to be sober to drive to Fire Island for the Challenge meeting this morning! I ALWAYS practice safe drinking!

Well? and where are the pictures? Would love to see at least...
It sounds like great fun Nancy!
And make sure you don't drink and drive ... you'll spill the drink :p

Seriously I hope you had a great time and much success last night!

Due to popular demand...

Nancy performing (with Bob Muller on bass):
[img]http://im1.shutterfly.com/procserv/47b6d825b3127cce8987aa62836100000016108BbtGbVoxbQ[/img]

Bob Muller:
[img]http://im1.shutterfly.com/procserv/47b6d825b3127cce8987aabe83bd00000015108BbtGbVoxbQ[/img]

The whole band:
[img]http://im1.shutterfly.com/procserv/47b6d825b3127cce8987947f836300000016108BbtGbVoxbQ[/img]

Oh, and by the way, they blew everybody away last night. Even the house band was impressed. You would have never known it was their first live performance in front of a crowd.

Great pictures, Diane! Now we'll recognize Nancy whenever we see her! Nancy, it's totally cool to see you performing. Now if somebody can give us some sound!

HOLY COW!! I'm still flying high....and it ain't on the booze I can't seem to stop smilin!

We didn't get to record last night...which I think we all regret now.

I could not have hoped for the evening to go any better than it did!

We got to play longer than scheduled & they were still asking us to keep goin. Unfortunately we RAN OUT OF SONGS! Our song list isn't very long yet. We did the 9 we have down pat. Everyone came to talk to us after. It was so cool! (can ya tell I'm just a tad excited! )

Yup, still smilin...& it will help tomorrow when it's back to the grindstone & taking sis to Dr appts. I'm so glad I did it & yes, keeping a balance to keep your sanity REALLY WORKS!

Nancy, you sound really ecstatic; I am so happy for you! I can "feel" the grinning all the way down here in Texas. We all knew you would be terrific. Way to go, Girl!!

Nancy
Many prayers are going out to your sister and your entire family. Also all the best for success with your band...looks like a great way to release!! God bless you!

Kat and Larry Waterson

Nancy package received and thanks. No luck with the post cards I guess? Thanks anyway.

Congratulations on a successfull opening night Nancy!!
HCS

Congratulations to you and your band Nancy! Looks like you were having a great time-I agree that sound would be nice!! Keep up the good work and glad to hear it helps keep your sanity. Still in my prayers!