Topic: Here's where I am now.

Hello my dear friends,

Here is my situation at this point.  Since March I've lost 65 pounds and now have gained 18 of it back in abdominal fluid.  I look every bit as pegnant as my daughter who is due within 2 weeks.  I had a drain on Dec 29, and they removed 3-1/2 liters; I had a drain yesterday 1/13, and they drained just shy of 3 liters.  The oncologist put my on some diuretic  12.5 mg of hydrochlorizide or something like that once a day and I haven't even gone to the bathroom since I took my first pill this morning at 8.  I am still on Gemzar and Xeloda, but it seems to be getting rougher, and all this ascites makes it hard to do anything.  Anybody out there who has actuallly had luck with removal of ascites without an outside drain or a stent? I've been on chemo for nearly 8-1/2 months.  Should I just go off and take a 3 week vacation or is that going to cause a setback as far as "hopscotching."  You guys are my doctors.  I'm so afraid of an outside drain because I live by myself, and would I have to drain that myself and how would I know how much to take out? 

Also - a very hard question for me to ask you guys.  I'm having a hard time bringing up final wishes and services, etc. with my daughter.  Should I even be doing this now?  We have discussed a little bit, but I feel like bringing it up, I am jinxing myself. 

I always picture you guys in cheerleader outfits spurring me on.  Love you, guys.

Sophie

Re: Here's where I am now.

Hi Sophie. I think about you so often. You don't know it, but I go naturally so often I could go for you as well. As far as the "BIG" discussion it just has never been an issue for us as we discussed it when Teddy first got sick 3 years ago.
I think if its handled in not a depressing way it is an important part of life as we get "older" and important to let family know how we feel about things whether we are healthy or not. Our "blended" family knows how we both feel on everything so it is no longer an issue. I like to have things "planned" out ahead of time just to have them off my delicate mind.  I know Jeff always says a break is good and you just have to go with your gut feeling. Please keep us posted and be strong!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Here's where I am now.

Hi Sophie,

I think it's good to let your daughter know about what you would like done. You aren't jinxing yourself, just getting things off your mind.

I've been on and off chemo for years.  This last time I've been getting it every other week since August.  I'm taking an extra week in between treatments this week since I feel like the last one hit me pretty hard and I could use an extra break before going back again.

I hope your draining problem will get better.  Sending some electronic cheers your way.

G

4 (edited by Bazel Wed, 14 Jan 2009 20:50:17)

Re: Here's where I am now.

Sophie,

My dad's oncologist gave him a standing order for paracentisis (Sp??) and he was then able to call the hospital and schedule an appointment when he wanted/felt he needed it. This allowed him to make the decision about his care and he liked that.

Also, as a daughter of someone who followed the path of this disease I share two thoughts with you. First, as hard as it was to discuss my dad's wishes it made taking care of the plans much easier when the time came. I can say the same about the other details he took the time to discuss while he was healty enough to do so (Insurance, bank accounts, etc). Second, I knew my dad very well and I was his champion. I was with him at every appointment (but one and I swore never to miss on again). I understood where my dad was in his fight; physically, emotionally and spiritually. I suspect your daughter is also in tune with your journey and will be ready to support your needs and wants.

Your daughter is on the cusp of a life changing and joyful event with the impending birth of a child, I suspect you don't want to cloud that joy with what may be a difficult topic. But as others have said you can frame this conversation in a positive manner. Your daughter is going to be very busy in the coming weeks and months and having this item off your to do list is one less thing for you to be worried about freeing up your energy to focus on wellness.

Bz

Re: Here's where I am now.

Dear Sophie,
I think of you often and send prayers your way.
Last week I saw a lawyer and wrote out a will.  I am also going to write out my last wishes & last year bought a cemetary plot.
I don't think this is jinxing at all.  I think this is wise planning in order to put less stress and decisions on my children at a time of grief when I pass.  I want to do what I can while I can to make it easier for them. 

Dear Sophie, I think that being honest and talking with your daughter especially before the baby is born, will put both of your minds at ease.

I hope that the ascites problem will get better.  Bazel had a good idea of having a standing order with the doctor to have it taken care of as needed.

I am so excited for you to see your new grandbaby born soon! 

Love you much,
Lisa

6 (edited by tiapatty Wed, 14 Jan 2009 22:21:31)

Re: Here's where I am now.

Just bursting to say...Hi Grandma Sophie!

My mom had heart problems and unbeknownst to us she had been writing her wishes down on various pieces of paper for more than 10 years so instead of talking to your daughter you could just write it all down and put it in an envelope for her. The only thing I would say is be as specific as possible. My mom's papers were actually all over the map, she crossed things out and added new stuff in, she changed her mind several times about cremation and not all of the papers were dated so it was hard to make heads or tails of some of it. There was one sealed envelope that we begged her to let us open in her last days but she wouldn't and when we opened it after she died, it repeated some of what was on the other papers and then mentioned again how she had changed her mind about cremation. She was not cremated and I still don't know if we did the right thing.

Patty

Re: Here's where I am now.

Sophie,

I've started a new topic in answer to your question.  I hope it's helpful.

You are in my thoughts and prayers!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.