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.