Treebywater

I won't stop praying for any of you. I'm so sorry, Jen.

I thought that this beautifully expressed the role of a caretaker. The whole blog has a lot of good stuff to say, though the writer has a diagnosis of colo-rectal cancer and not LC. Anyway: http://www.npr.org/templates/story/story.php?storyId=5630376#commentsection (scroll up if it brings you to the bottom of the page)

((((((Sharyn))))) I'm praying.

Joanie and Brian--Praying for you both. Tell Joanie she doesn't need to keep the docs on their toes quite this well. And let her know that we send tons of hugs. Val

(((((Melinda))))) I'm devestated for you for all that your Mom is going through and for this news that Avastin isn't an option any more. It is hard when you can't be there all the time. The phone just isn't enough, is it? Praying for better days for all of you. love, Val

Michele-- Our brains are funny things too. They will try to protect us by NOT dealing with it at first, or keeping you kind of in a 'denial' state for most of the day.... The loss that you've just experienced is a HUGE shock to your system so because your brain doesn't know what to do with that, the feelings come later as the loss becomes more concrete. My husband is in the Navy and is gone very often. About a month after my Mom died, my husband left for a six month deployment. A big part of me thought that when my husband got home, my Mom would come back too. Part of me felt (and still feels) that she's just gone for a long time and eventually she'll be back. The upside of that is it allows me to cope, the downside of that is that I am effectively hit over and over and over again by the realization that she's NOT coming back. You are in the VERY BEGINNING of this journey. There is no 'supposed to' here. You can't make yourself feel anything. Feelings take time. More will come when the shock and the numbness wear off... And that will be hard--just as wondering why you aren't 'feeling more' is bewildering and hard. It all stinks... It just really does. But... it's what is facing us, so we walk through it. And the jealousy--yeah I get hit with that too... When my friends talk casually about doing things with their Mom, or I see a Grandma, a Mom, and a Grand-daughter about Carolyn's age it is hard not to feel that pang of envy. I guess that's part of it too. It's hard... but eventually I think we can channel those feelings into knowing that we can't take ANY of our loved ones for granted. BUT--the last bit doesn't have to be forced. Don't be hard on yourself when you feel those feelings. They're all part of the game. (((((hugs))))) to you. I wish this didn't have to happen to anyone.

He's not doing anything wrong. The chemos just knock all the good stuff out too. My Mom had MANY blood transfusions. Let him know that it's normal par for the course. And both of you hang in there!

No words... Just (((((Jen))))))

I'll be adding about a dozen soon!

I love NED. And babies.... If it ends up being a boy, maybe you could name him NED? No, no... Just kidding. DO keep us posted. Nothing perks us up around here like a sweet little baby.

I watched a homemade DVD that my Aunt and Uncle put together of their visit to see Mom about 10 days before she died. The first night of their visit I ate some humble pie and went and begged to borrow a guitar from a family that we had once been friendly with but weren't anymore. I brought the guitar home and handed it to my Uncle and he played songs late into the night. That was one of my Mom's favorite things in the world--to sing with the family as Uncle Ken played his guitar. So as I was watching, of course a million things hit me. The first was--My God, Mom looked terrible. She looked like a woman who was dying. Turns out, she was... I just didn't know how close she was to the day she would go. I guess DeNial really is more than a river in Egypt. I didn't think I had been so firmly steeped in it at that point, but I guess maybe I had. The second--Carolyn was SO LITTLE. I mean... she was at that boring baby stage where you love them just because they are so helpless. She was rolling over, but that was it. That really smacked me. Mom has missed so much of Carolyn's life. I was so blessed and lucky that she was able to see her before she died, but she has already missed so much... Carolyn woke up while I was watching the videp, and I brought her out to rock in the chair and watch along with me. She pointed to the T.V. every time Mom was on it.... Maybe I am reading too much into it... But maybe something in her knows her Gramma. I want to think so. Mom's quick wit and fast mind are as evident as ever in this video. Here she was less than two weeks away from her last breath, but she was cracking jokes... recalling obscure trivia, and naming off the original artists of old gospel and country songs with a far greater recall than any of the rest of us. My favorite part of the video is during a part of the evening where I was off looking for guitar chords on the internet for my uncle to play more (he was a little rusty ), and it was just Mom and my Aunt and Uncle in the room. Mom ends up relating a story that we'd been referencing all night about my loving the song, "Tennessee Flat Top Box." She remembered the very smallest detail of the story... and told it with that 'Mom voicte' that I'm only just beginning to get. And then she says they thought I'd be the next "Doogie Howser" or "Sally Ride." I'm suprised that I was able to watch the thing... and yet I'm not. As sick as she was and as terrible as it was to see her that sick, I needed to see my Mom. I needed to hear her voice and see her mannerisms. At the end of the video, she goes to bed, and I swear to you, part of me thought I would go back into the hallway with her and hug her goodnight. I thought I would feel the hug. Husband is home now, so I must be away... But those are the late-night ramblings of Val in reflecting upon the video I just watched. Where else would I be able to ramble this way? Val

Jen, That was so articulate. And so true. I think once cancer hits our family the old normal is gone for good. And it is hard *not* to ache for the old normal. I'm sorry for this slap in the face. I wish cancer didn't have to happen to anyone.

I've been praying here too. Do keep us posted.

Jan, I'm so sorry to read this. We will continue to support you through the grieving stuff if you are emotionally able to keep visiting. Know that we care.

Char, I am so sorry to read that your Dad is gone. Know that we are *still* here to support you in the days to come.

I honestly didn't even start the real crying until Mom had been gone about nine months. I had some other difficultish things to travel through during those months and all of my energies were focused there. Those first few weeks for me, I kept saying that I didn't know how to grieve. I couldn't figure it out. I knew I was supposed to be crying or something, but instead I just did normal life. It is amazing how 'normalish' things just keep happening in the midst of wholly abnormal. Praying for you and that baby. I know how much you must long to just put that baby in her arms... I so wish that you could. Know that whatever you are feeling is ok. Numb, sad, angry, mournful, whatever. And know too that we will be here to help you process when more feelings and words come. Many, many ((((hugs))))) to you.

(((((Jen))))))) It is just so very hard. If you need an ear, please PM me. If you need a 'real time ear' I'll send you my phone number. Take care of you, and spend as much time with your Daddy as you can. Cherish every moment that he is able to give you. The really "dad-like" moments will eventually taper off and you'll need a treasure-store to keep you going. Praying for you all. Val

You've gotten fantastic advice here. I will only add this: When hospice is involved I think it really comes down to the wishes of the patient involved. When that person can no longer clearly specify their wishes then you defer to the needs of the spouse. At least I tried to make that my rule of thumb. If you are there caring for your Mom I would guess you know her well and you have a pretty good gut-feeling about what she would want (and... it sounds like that is to be at home for as long as possible). If you and your Dad are able to do the care that is required then by all means keep her home. If it were ME, I would want the familiar surroundings of my home and family to comfort me while I took that very unfamiliar journey. You are doing A GREAT JOB of caring for your Mom and advocating for what is best for her and your Dad. Keep keeping on. And know that you can always, always come here for support.

((((((Jim)))))) (You tough guys need hugs too, yes?) Have I said lately that you are my hero? Well, you are! Praying about the trial. I know the five hour car ride must seem daunting and tedious. Do let us know how it goes. And know no matter what that we're in your corner. Val

I am just so sorry that you have to deal with all of this... What a tremendously difficult thing for one family. Know that you will ALL be in my prayers.

(((((Erin)))))) We survive because they want us to. And so we can tell our beautiful little ones about them. Hurting with you today.

Sue, You, Missy, and the rest of your family will remain firmly in my prayers. You are a beautiful inspiration and we love you.

AWESOME!!!! You plan away at the wedding--keep us posted on the girly details--the flowers, the colors, the dresses. I am delighted with you!

What a scary thing for you all to go through. I'm praying that something will emerge as a good option and that will be just the thing for your husband.

Oh Kim. This is just devestating and heartbreaking. I'm sorry your Mom is having such a hard time. And I can completely understand your feelings. Have they looked at options like Tarceva or Perifosine? The treatments that are a pill form that might be less invasive and carry fewer crippling side-effects than chemo? Please keep us posted. Know that we care and are praying. Val