Good evening everyone! This is my first day to emerge from the dark places of lurking around, clandestinely (is that even a word) reading posts and hearing about everyone through my husband, Ed (aka: Uptown). For a long time I felt I was invading the intimate/hallowed spaces of everyone's circumstances/situations...

Over a Starbuck's today, I asked Ed if anyone used Caringbridge.com for their family and friends. (My little recovering techno-geek, as he once called himself, informed me that Caringbridge.com was a BLOG! To which I promptly informed him that that wasn't very nice and certainly he should never call me that again!)

Forgive the (I feel it coming on) long story... (Sorry, Ed - I really don't mean to embarrass you.)

The day Ed went in for his "let's get ready to roll" surgery (i.e., yanking all his posterior teeth and the medaport and gastrostomy tube installed they had just kicked me out of the holding tank prior to wheeling him away. God was that scarey! I hated it and wanted the Dr. to turn around and say, "kidding! We were only practicing our procedures!" I was staring into space half eavesdropping on families' conversations without really processing what they were saying. There was this mother and daughter talking across from me. I can't imagine the courage of the woman scheduled for surgery because of all the people she was with - it was nearly impossible to tell who the patient was! They were talking, laughing and her mom called her name. They were so engrossed in their conversation that when the surgical staff called this lady's name - nobody in the room responded. I excused myself for interrupting and asked if they were calling one of them...

Through Ed's surgery, her mom and I got to chatting and when Ed was finally done and they escorted me to his room where "he'd be waiting for me", I wished her well, got a hug, shed some tears and off I went to join Ed in the war we just started waging. (Oh, let me tell you... his surgical recovery time was short because of the urgency to get started on simultaneous chemo and radiation...and UGLY! Oh, was it ugly.) 'Made me want to cry for him.

Ed went through 45 days of radiation and three rounds of chemo and on his last day of chemo - here's this lady that had surgery two months earlier - and it was her FIRST day of chemo! Because I never really met her, I introduced myself (hugged her mom) and quickly told her that her mom was such a blessing that day and wished her well.

If anyone's familiar with UTSW in Dallas, the chemo lab has this little room with a heater for blankets. They also keep soda, juice, snacks, etc for patients. Anyway, Debra's husband was this big tall guy that looked like a scared kitten hovering in the corner watching his wife get swallowed by an unfriendly blue vinyl recliner. I asked him to come with me and while I was able to "show him the ropes" told him how scared I was at the "what should we expect" thoughts. Told him Ed really liked the first thing, for me to offer a pillow, a warm blanket and maybe something to drink - maybe he would like to establish that same routine with Debra?

We hugged thinking we'd never see each other again, since she was fighting breast cancer and Ed just finished what treatments were available for his base of tongue stuff. Before I left she asked me if I would please visit her again and gave me the address for caringbridge.com.

Since then, we've actually run into her while she was headed to radiation and we were headed to visit our angels in Radiation Oncology. I've since been SO blessed that she trusted me with her site AND that I was able to keep up to date with her challenges and milestones throughout her recovery.

If my family were more into computers - I would liked to have done that for Ed. People who love our cancer warriors are so concerned and try to be loving by "not bothering" us with phone calls because they're so afraid they're going to interupt or wake us but they SO want to know. You can create a little journal (as often or as short as you'd like) photos, etc and friends and family can reply/just visit/share...

Just a thought. Sorry to be so verbose but you gotta know how important you are! I thank God everyday for people like you who boost our morale, encourage our spouses and make even a really crappy situation tolerable. It makes my heart swell to think (even when our society seems to be becoming indifferent and people begin expecting something in return for whatever they might "do" for another/there's strings attached) you folks are there to prove there's really hope, kindness and genuine love.

Have a great evening!

Susan

Thank you, Susan, for the good story and encouraging words. As a caregiver also, it has been a long, hard, road. Some of the "good" that came out of our situation is a friend who took off work every Monday for 7 weeks to sit with Dan and I during his chemo/rad. It was a full day in the hospital and it meant so much to have a friend go thru it with us. Also, on my daily prayer list are some of the nicest people that we met who were also battling some form of cancer along with many names from this board. It is good to know that there are many loving, caring people still out there. I really appreciate your post.

Take care,
Debbie

Susan,

Welcome to the boards. I'm very glad you joined us. Ed has become a very good friend to many here. He always is kind and thoughtful in his replies to people.

Now, to have you on board as the caregiver side (we'll hear the true story - (grin)). Really glad you posted and look forward to hearing from you often.

Dinah

Hi Susan,

Jut to let you know I think your husband is fantastic. He is truly a wonderful caring human being and I'm sure that you must be an incredible woman yourself. He speaks very highly of you. He has really given this site a lot of his time and always makes people feel welcome!

Take Care,
Dani

Dani, (et al)

Hey, I saw that! I appreciate all of your kind remarks. I just don't feel the same lately because my heart is so heavy. We have so much to be joyous about but we keep getting those setbacks, too. I just feel so helpless at times. Your kindness has brightened my day more than you will ever imagine. Thank you.

Ed
(Uptown Girl's Uptown )

Ed,

I know what you mean. It makes it hard for me to log onto the site but I know that if I don't it will bother me to not know what is going on. So its a catch22 for me. My heart is extremely heavy with all of the sad news lately and it is definately hard to be cheerful. My baby girl has a cold too and she just cries and cries lately she's at the stage where she doesn't want her diaper changed, doesn't want her nose wiped, doesn't want her face wiped, doesn't want to put on her clothes, doesn't want to put on a bib. If she could talk I'm sure she would just say "Don't touch me!" The combo of all these things has me just about at wits end.....

But.....
I really mean what I say Ed, you are terrific! Where is Sabrina? She always puts a smile on my face.

Dani :rolleyes:

Dani,
I wonder if you realize that you also make many of us on here smile! I love hearing about your baby and about your mom. You remind me of my daughter Megan (20) who spends the most time with me and who seems to worry the most. When I read your posts I realize that Megan loves me that much and it makes me feel good. I have thought about having her get on this board as she would offer so much for the young adult children, but I hesitate because I'm afraid it would make her more fearful.
Regarding Keely's behavior right now........ I've been through that stage 7 times and twice as a Nana and she sounds like a wonderfully normal little girl!
Take care Danielle and give your mom a hug for me.
Minnie

Dani, Dinah and crew -

My heart swells with joy (and pride) that you all get to see a tiny piece of why I married Ed. He IS without a doubt a lovely man with a sometimes quiet/dry sense of humour (until he gets going with the machine gun giggle and then quiet is out the window...) and HUGE compassionate heart.

Thank you!

Susan

Minnie,

Thank you for your post. That makes me feel sooo good and gives me a huge reason to keep logging onto the site. There are so many incredible people on here and you know how I feel about your warm and caring posts. I think there is the perfect balance of personalities on this website. Gary-always has comforting and knowledgeable posts. Ed-with his lighthearted humor and postitive attitude and then there is you who always has a warm caring way of making everybody feel loved! You three have really made my visits to the website so worthwhile along with so many other wonderful people and all their positive caring posts. Wow I think I'm getting a little overly sentimental. Its just been tough on here lately with Dan, Sharon, Lynn, and Greg's news. Minnie, I'm sending a photo of me and Keeley to your personal e-mail address so you can see what a little angel she is.

Susan,
I would love to hear Ed's laugh and he does have a HUGE compassionate heart!

Dani

Dani
Yep I would love to hear Ed laugh.. hope we all get to vegas.. Susan thanks for sharing Ed with us and thank you for joining us too..
prayers love and hugs
Helen.

Ok I am missing something here, What is happening in Vegas?? I live here, are ya'll meeting up in Vegas or something?? Please clue me in. Ok, My honey works at Cearsar's Palace. Always, Vicki

Hi Miss Vicki,
I just sent you an email re: Vegas gathering.
Judy U

This might sound off the wall but I'm going to say it regardless.................I picture Ed as an Eddie Murphy type without the foul language. I don't know why, but when I think of Ed I think of Eddie. Strange I know! Eddie makes me laugh and so does Ed, can't wait to meet him along with everyone else in Vegas.

Dani, Keeley is so beautiful, all my girls enjoyed the pictures. I am sending some your way also.
Minnie

Dani, your daughter sounds just like me, except I can talk! If you don't believe me just ask Susan.

My laugh even makes me laugh it is so funny. I remember one time in Columbia, Maryland and we got snowed in for an extra day and while I was in the restroom, my youngest was in there and the scene just hit me a certain way. He was on the throne and I started the giggling and hysterical laughing. We came out of the bathroom literally rolling on the floor. He later told me that he was really scared when I first started laughing because he didn't know what kind of wierdo was in the bathroom with him.

And, by the way, Minnie, my language has gotten foul through this whole ordeal...but only infrequently (I hope).

See y'all in the desert!

Ed

Hm. At least he admits it. Sometimes he's got a pretty foul attitude, too. Under the circumstances - I don't much blame him. Regardless - YIKES! It makes me feel like a drop of water in a hot skillet - jumping around without a purpose.

I'm so excited to meet everyone.

Hugs to all. I'm off to peruse the posts...

Susan

My mom was over yesterday babysitting my daughter and she looks soooooo good. She got a tan and she's totally starting to look like her old self again. She complains about the loose skin on her neck around where her neck dissection was so I told her to get plastic surgery and she looked at me like I was crazy. She said thats the last thing I would ever do after all the surgeries she has been through the last thing she would want is an elective surgery. Oops didn't mean to upset her but no complaints other than that and just the amount of time it takes her to eat. She is doing so well I'm sooooo relieved now everyday as a daughter of somebody going through oral cancer treatment my life gets a little easier.

My mom is going back to work the day after Memorial Day she has mixed emotions about this. I think it will be good for her I just hope it doesn't wear her out too much.

Take care everybody. I'm off to the Colorado River again for Memorial Weekend.

Dani

Dani,

I know what you mean about the loose skin problem. I sort of half-joked with my husband that having radiation was like having a reverse facelift, and maybe I needed to do something to get it fixed. He said absolutely not -- your face is what you are and what you have lived and a sign of character. OK with me.

I hope your mom continues with her great progress. Going back to work can be tiring after this ordeal, so please be sure she doesn't wear down too much early on.

Cathy

Hey all,

Just wanted to share some photos of my little girl with with everybody. These were her Easter pics. She definately has a way of putting a smile on my mom's face so I thought I would share....
http://mystudio.kiddiekandids.com/viewshare.asp?c=522012313KQTFR9FD

Try to click on that link if that doesn't work then type it in the address and hopefully you can pull it up.

Have a great Memorial Weekend!
Dani

Oh Dani,
She is just beautiful! How old is she? I know she keeps you busy but what a joy to have her!
Thank you so much for sharing her with us. Little "day brightener" is she!
God bless
Judy U

Judy,

Thank you. She's my little angel,she is 8 months old and gave me a terrible scare this past weekend. Her fever got up 103.7 and we rushed her to an Emergency Hospital in Parker, Arizona. If anybody is familiar with Parker its a tiny little town on the Colorado River and the emergency room was pretty small. They pumped her tiny little body full of Tylenol and Motrin and gave her shots of antibiotics and got her fever down. They don't know what is causing it so we had to take her to her pediatrician yesterday and she's going to do some bloodwork. She seems much better now but it was a pretty rough weekend for me. Nobody can truly warn you about what motherhood does to you.....

Take Care,
Dani

Dani,

Thank you for sharing your daughter's pictures. She is just adorable!

I am so sorry you had such a rough time. Nothing makes you feel more helpless than a child with a high fever. I think it was rougher than this whole cancer thing.

When my oldest was 6 months old, mom went on a camping trip with a bunch of girl friends. My dog was in the vet and it didn't look like he would make it and my boy had a fever of 103. I called the doc he said if it doesn't go down in 24 hours call. I made it for 24 hours with tylenol, wet wash clothes, worrying, etc. and called back. It was now at 103.4 and the doc said if it doesn't go down in 24 hours call back. In 24 hours it was over 104! I called him and as soon as he said if it doesn't go down, I unloaded. I said, look here you son of a b****, if you don't meet me at the ER now, I will come stick that phone down your throat. He quickly said yes...but when I got to the ER, as soon as I gave my name they leaned over and said, this is the guy. Soon a team of police officers converged and stood around me with nightsticks in hand!

I was calm and the fever broke as the doctor was examining my son and everything worked out. It was certainly tense a few times that weekend. By the way, my dog had to be put asleep the next day because his temp had gone up to 108 and his kidneys and liver started shutting down. I can't remember a weekend much rougher than that one.

Ed

Holy cow, Ed! No kidding!? They called the cops???????? I can only imagine the level of frustration you were feeling! Except for the very sad part about your dog, it makes for a very funny story now. And isn't that just like a child.......Mom and Dad can spend hours of sleepless worry.......get child anywhere
NEAR a doctor and fever disappears. Never fails. :rolleyes:
Judy U

Here's a funny story that my older kids still laugh about.
When my daughter, Mercedes, was 2 (she's 13 now) we had 8 children living in our home. The neighbors took us to be crazy and bought into the stereotype that parents with lots of kids don't take care of their kids (my husband and I are two of the best parents I know).
I had bought my husband a pair of boxer shorts that were fashioned after the playboy bunny style, and he had these on this night. It was hot, he was laying on the couch and Mercedes was standing on his stomach hollering out the window that we had open. She could see out the window by standing on her daddy's belly. This was later at night, around 11pm, and some of our neighbors were taking a walk. They saw Mercedes in the window hollering but could not see my husband. Do you know these fools called the police and told them that we had left our toddler alone in the house? The doorbell rang, my husband in all his playboy finery answered the door (forgot what he had on!) and the cop simply looked at us dumbfounded. The look on my husbands face when it FINALLY dawned on him what he had on was priceless, lol. The cop left and we laughed for a long time. The next day, we taught our kids a little something about the proper time to fight back and "make a scene". First, my husband hand painted a HUGE sign that said "If you have a problem with how we raise our children come tell us about it" and planted it in the front yard. Then he typed up a flyer, printed up approx. 100 of them, and he and the kids hand delivered them door to door. The flyers said pretty much the same thing as the sign in the yard. The neighbors never did end up respecting us anymore then they did before though, our actions simply convinced them that we truly WERE crazy, lol. We moved a short time after that. I could write a book about funny stories with kids. Did I ever tell you the one about the NO PARKING sign?? You know, the one with the big red "P" in a red circle with a red line drawn through it. My grandaughter, Kayla, said to me, "Nana, see that sign..........it means "no peeing, it means you cannot pee in that spot, just like on our carpets at story time. You have to go to another spot without that sign." Comic relief, gotta love it.

This brings up a memory!

One of our friends, when we lived in California, was stuck on the highway in a traffic jam. (duh!) She had 5 kids and one of the girls was beating her brother with a hairbrush. As I know we've all done at one time or another, this Mom just reached around and took a swipe at the offender. Unfortunately, she connected and managed to slap the child on the cheek. Not on purpose, one of those "don't make me stop this car" swings. Unfortunately, there was a San Diego cop behind her. He immediately pulled her over and arrested her!!!!!!!

Hindsight, we can laugh, but at the time it was awful. She had to go through family counseling, the whole nine yards.

Fast-forward a few months. My oldest was three and ran in front of a car in a huge parking lot. I have to admit, I was trying to drive a stroller with his newborn brother, keep the bags from falling and chasing this bugger!!!! I lost it. I grabbed him up once the car came to a screeching halt, and busted his little behind. As I'm putting him in his carseat and trying to explain to him why he was spanked, this HUGE cop with mirrored sunglasses walked up. I could have died!!!! I started pleading my case, and all he did was, pull off the glasses, look down at me and Shane and say that I did the best thing possible. He said, "I remember when my mom had her hands full, and I would try her. She gave my butt a whipping when it needed it, and that's why I'm where I am today".

He reached in, gave Shane a hug, and said, "Listen to your Mama....she loves you".

I'll never forget that good man.

Love,
Mandi