My mom just diagnosed. overwhelmed

reenie

Hi Becky,
I see you’ve heard from just about everyone. I guess it has become clear why we are so hesitant to sound hopeful. Most of what we do is pass on what we have learned from our experiences. While not traditional in our support, we still celebrate that Diehl is giving this disease a run for its money; we pray that Mark’s wife gets to see her youngest turn 9, we look for small ways to share, in the hopes of easing the pain for the next family. Some of us feel a sense of control by learning about the numbers; some of us leave that and focus solely on our loved ones. Either way, we don't judge.

Do you have some local support? Are you receiving meals from friends? Sam had an intestinal obstruction treated with a PEG to drain- which means he was not able to eat; surprisingly hunger became a thing of the past. The kids (13 &15) and I didn’t want to eat when he could not so we often grabbed a sandwich and froze the meals. We are still reheating casseroles and I must confess to putting a few lasagnas down the disposal... I know it’s hard accept help but I always tried to remember how good it felt to give help and that made it easier to accept help.
I saw some excellent advice on a very practical note from Pat. I didn’t need nearly as many death certificates; some companies were amenable to returning mine once they saw them. In addition, my funeral home said it would only be a matter of days to receive more once the initial order was filled. It could have been that our arrangements were simpler and therefore we needed fewer copies. As hard as it is to imagine actually doing some of this leg work now, Pat is so right in that it will help later. I actually wrote Sam’s obituary in the weeks before he died. It was hard but I am glad I took the time to reflect upon his life and to consider those things that made him special. It gave me comfort to know I had honored him. I also had my brother in law prepare a huge slide show of photos of Sam with friends and family (for the reception following the funeral) so that so many of the people who had shared his life could enjoy the memories- the photos prompted the stories- the laughter, the tears. It was also good for all of us to see him healthy again.
I look this over and again fear I have added to your burden. Please know that all we say, we say with only the hope of easing your mind- sometimes knowing what to expect helps to make you feel less alone in this.
I wish you Peace, Reenie

kmeshelper

Dear Becky,

Reenie and Big Sister both gave you great advice. We, too have already written Kathleen's obit. She actually directed what went in it and which papers to send it to.

I can't believe a week has passed since I was last here. We are still in a Hospital Hospice unit. No epidural was done because the mixture of lidocaine and dilaudid has been wonderfully effective. We aren't home yet because there is some administrative issue about administering IV lido in a home setting.

Two weeks ago I would have been nuts over this, but yesterday, after a full 24 hours of comfort, our Kathleen woke up to tell us goodbye. She's too tired to fight anymore and just wants to sleep. As awful and sad as this is, we understand. So we'll just stay here and wait.

Again, I emphasize -- pain control has been everything once the chemo ends. And to everyone else reading this: That graph they show you about how long the patient has is a bell curve! Not everyone fits in the middle. Although chemo had its rough moments, Kathleen has made it for FIFTEEN MONTHS - without a Whipple. And until last month those months were great!

So be ever hopeful for tomorrow and live each day like it's the last.
Warm thoughts and hugs to all,
kmeshelper - Sandy
_________________
stage 4 unresectible pancreatic diagnosed
2/23/06 at age 44
Gemzar/Tarceva til 4/24/07

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