Members justnicki Posted March 12, 2008 Members Report Share Posted March 12, 2008 I've posted here before, but it hasn't been for awhile. My dad's been sick for a long time (somewhere around 10 years) and I guess that I just needed to post again.Summary of what his various diagnosis's are: Heart - congestive heart failure and a pacemaker/defribulator, Kidney - dialysis, Diabetes, Prostrate cancer that's now in his bones, and I'm not sure where else the cancer is.Found out tonight that his PSA's that were 5 in September... are now 53 on treatment and he's refusing chemo. He's talked for awhile now that he wants to just have it end. A few weeks ago, I think that it might have just been 2 weeks, it was that the hospital folks had tried to clean out his dialysis line and messed it up leaving a raw spot and the realization that he's probably now got one less time that he can have line problems.You know though that it's hard, 'cause I'll talk to him and he'll be having such a great day and I can tell from what he's saying that he's either doing really well... or it's a really good act (he's good at acting sometimes). Then a day or two or a week or two later... and he's back doing poorly again.I mean a few weeks ago he was planning on an Alaskan dialysis cruise for the summer. And tonight... he's not doing well again.The whole teeter totter thing is getting to me again. It's hard to be professional at the office and have to push all of this away. Knowing that if the phone rings or if somebody starts talking about their dad that I'll either have to walk away from the conversation or try and change the topic or find a way to go home.I think that I just need to turn this off tonight... turn off my feelings and get some sleep. Tomorrow's a work day and I need to go and be professional. Link to comment Share on other sites More sharing options...
Members 4everjoeysmom Posted March 13, 2008 Members Report Share Posted March 13, 2008 Nicki, The title of your post caught my attention, as my son Joey used to say "Keep On Keepin' On". I'm so sorry for the silent anguish that you are suffering, and for the physical and emotional suffering your dad must endure as well. It IS hard to be professional, and what's even harder is when the workplace expects us to 'just go on' as if nothing else matters in our lives but the job. I feel very sad for how you feel. There isn;t much I can say that is helpful. I guess I just wanted to let you know that I read your post, and I prayed for you. Hugs, Claudia (Joey's Mom) Link to comment Share on other sites More sharing options...
Members justnicki Posted March 14, 2008 Author Members Report Share Posted March 14, 2008 Thanks Claudia Link to comment Share on other sites More sharing options...
Members justnicki Posted May 1, 2008 Author Members Report Share Posted May 1, 2008 My folks called tonight... to tell me that his PSA's now over 100. When I last posted it was 53. We all had a good cry.He sees the oncologist next week for a full bone scan... possibly going to radiation where the pockets of cancer are. Though his pain is all over.How am I supposed to deal with Friday? Need to be at work. This just seems to get worse. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 12, 2008 Members Report Share Posted May 12, 2008 I am so sorry....if you ever need to talk to someone I am here for you Link to comment Share on other sites More sharing options...
Members justnicki Posted May 12, 2008 Author Members Report Share Posted May 12, 2008 Thanks Karolyn... tonight I don't even know what to say.Just need to get through the next week... get everything done, keep going putting one foot in front of the other.The docs either couldn't or wouldn't tell my mom how long they figure that he's got. Nobody seems to know how much more of this he'll be able to take.I'm anticipating finding a feeble old man, and that makes me really sad. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 13, 2008 Members Report Share Posted May 13, 2008 The Drs seems to always cover their backs by not giving estimates, I think your approach is the right one, one day at a time, one foot in front of the other. I will keep you in my constant prayers for strenght. Please update us as soon as you can. Link to comment Share on other sites More sharing options...
Members justnicki Posted May 16, 2008 Author Members Report Share Posted May 16, 2008 My dad has his first radiation treatment the day after I come home from visiting them. Sounds like he had a good day yesterday and is looking forward to me coming to visit. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 16, 2008 Members Report Share Posted May 16, 2008 It's good to hear that, I am learning to also live one day at a time, enjoy the good days and try to surf the bad ones the best I can. It's good you can go and visit him. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 20, 2008 Members Report Share Posted May 20, 2008 Hey there, I hope things are smooth on your side...many hugs Link to comment Share on other sites More sharing options...
Members justnicki Posted May 20, 2008 Author Members Report Share Posted May 20, 2008 I'm home now... had a long cry on the drive from the airport... I mean logically I know that he's going to die, but somehow I thought that he'd carry on for awhile. He's a gray frail old man now... he was always soo tanned when I was younger. Now all that he does is sleep for the majority of the day.I've asked my mom for the bad news on Friday nights... that way I can still go to work when needed. The Thursday night calls with bad news left me in no fit shape to be in public, especially in an office setting.She's expecting that the news that they'll get on Wednesday will be bad. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 20, 2008 Members Report Share Posted May 20, 2008 I am so sorry my friend! those moments when you cry are sometimes needed to lessen the heavy load. I know how you are feeling, I can also see the weakness in my dad's, I can see that he is not gonna make it and I can so relate to how you feel. I keep you in my caring thoughts... Link to comment Share on other sites More sharing options...
Members justnicki Posted May 23, 2008 Author Members Report Share Posted May 23, 2008 The radiation was supposed to start this past Wednesday originally, I understand that when my folks got there they were told to come back on Monday. Really not sure what went on with the change in date.I'm trying hard to just keep going one foot in front of the other... it's easier when I can focus on work and bury myself in it. Quite easy to do lately, have a big project going on at work. I know though that I can only keep this up so long before I suffer for it.Ok, I'm just rambling. Link to comment Share on other sites More sharing options...
Members karolynca Posted May 24, 2008 Members Report Share Posted May 24, 2008 That's ok, I think rambling is good...it makes you empty your brain and let go on some stress. I have a big project at work also and as you I tend to bury myself in work...hang in there and keep us updated. Link to comment Share on other sites More sharing options...
Members justnicki Posted October 4, 2008 Author Members Report Share Posted October 4, 2008 I know I haven't been here for awhile. Trying to keep up with work and deal with dad getting sicker.News of the day: he had a seizure when my mom was visiting him in the hospital (was admitted last week). The oncologist hadn't been sharing information with the pallative care team but finally admitted today that the common thread throughout the information that hadn't been shared was that the doctors didn't understand why he was still dialyzing (he's on kidney dialysis). Sooo... the long and the short of it is that he is scheduled to get a CT about the seizures... but if they continue or he's had more previously... he's done with his dialysis (and pacemaker/defribulator) and will be headed for hospice. Basically he'll be dead in days.It's been a long fight, but at least my mom's finally getting to the point where she's realizing her own limitations. I'm a long way away and so she's been his primary caregiver. He soo much wanted to go home from the hospital before this, but she couldn't have him there when she couldn't deal with him. He's confused from the pain meds (and possibly the cancer) and has trouble walking now. Doesn't help that he's a lot bigger than she is.Nicki Link to comment Share on other sites More sharing options...
Members karolynca Posted October 5, 2008 Members Report Share Posted October 5, 2008 Thanks for the update, I know it's not easy, in my case I was the caregiver because my mom is in a wheelchair and was not able to be my dad's caregiver. It can take a toll on you and managing being the caregiver plus all the other stuff is not easy Link to comment Share on other sites More sharing options...
Members justnicki Posted October 5, 2008 Author Members Report Share Posted October 5, 2008 Found out this afternoon... that he stopped his dialysis yesterday. His life expectancy now is about 3 days. Link to comment Share on other sites More sharing options...
Administrators Kelly Posted April 6, 2009 Administrators Report Share Posted April 6, 2009 Guess who is traveling the farthest to our reunion?It's Trudi.Trudi is traveling all the way from Australia to Minneapolis, MN for our Beyond Indigo reunion in August!If Trudi can make it, so can you! Come check our reunion page: http://www.beyondindigo.com/reunion/Hope to see you there! Link to comment Share on other sites More sharing options...
Administrators Kelly Posted August 8, 2010 Administrators Report Share Posted August 8, 2010 Dear Members,We are excited to mention that we are moving to a more new and improved message boards on MONDAY MORNING AUGUST 9th! The boards will be done for a few hours while we are making the conversation. Remember we posted information about this move a month ago. For some of you this might seem a bit sudden, but when we were reviewing the site we determined the current message board you are using is out of date and the company that designed it is no longer in existence. The good news is this new message board will have new features that have been requested in the past like more fields we can add to your profiles and a chat room up to 20 people at one time. If we find the chat room is bursting at the seams we will add additional room for extra people. All your old posts, private messages and such will be migrated to the new message board. You might have to put up your profile picture again but not sure. The new company will be doing the migration for us. Here is a short list of some of the new features on the board:- Custom Profile Fields- Users can customize their profile pages by selecting a background color or background image, with tiling options.- Facebook and Twitter Integration- users can respond to multiple posts at once with "mini-quote"- Pinned discussion threads - like welcome to our board etc.- Announcements made across some boards or the entire message board- Search: Users can easily find all content generated by a particular member, by clicking the 'Find Content' button that appears on the main profile page, or in the Mini Profile Popup which can be accessed throughout the board. The results page allows content to be filtered by application, as well whether the member created it or merely participated in it. - Privacy: allows users to sign in anonymously, hiding them from the online users list. Users also have the option to disable personal conversations and user-to-user emails, as well as ignore other users if necessary.The next exciting piece of news about the new message board is it will have a new domain name of www.grieving.com for search engine optimization purposes. It will still be apart of Beyond Indigo and can be found through www.beyondindigo.com. We will be redirecting your current URL's to this new domain name but we might miss a few. If that is the case simply go back to www.grieving.com or www.beyondindigo.com to find your message board thread. We will try to make the transition as seamless as possible. The bottom line is the new board will give us room to grow our community and more options to interact better with each other. If you have any questions please direct them to feedback@beyondindigo.com. Kelly Baltzell, MACEO/PresidentBeyond Indigo Family Link to comment Share on other sites More sharing options...
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