Patkid Posted November 29, 2005 Share Posted November 29, 2005 Where to start? Well, the most important thing we want to convey here is our heartfelt thanks for the posts, pms, emails and snail mail. We love you guys and have no clue how we would make this journey without you. Next, don't forget that we have you each in prayer. Our church family prays everyday for LCSC and Brian and I have you in our minds and hearts all day. When we don't post an update it is because we don't know what to say. Our status changes literally by the hour. Brian has a host of weird things going on. They all come and go and they all change. Back Spasms Horrible foul foul foul foul Diarrhea (it has been a while since that side effect, I better learn to spell it, again) Dizziness Vomiting Increasing Neuropathy Low counts Occaasional Confusion and memory loss Loss of Appetite Weirdly increased appetite periods (very short) of perceived energy and busy~ness Quietness Talkativeness (mostly at night!!!!) False Bravado He also has had 3 days of increased time out of bed and sitting up. his pain patch causes constipation, which we have been fighting, so this diarrhea is really throwing him for a loop. He is kind to visitors but would rather have NONE, and then suffers guilty feelings for expressing that. He worries about my FML all the time. I finally figured out that my taking this time may have been a mistake. Our onc went to his home country (Turkey ~~~how appropriate is that for Thanksgiving???) and is back now. When Brian was so bad I talked to the RNs about Hospice and made a few calls about it. There are 5 options in our area. The first one I called was Heartland Hospice. The woman who talked to me used to work at the hospital our Cancer Center is part of.........so she knew our doc and nurses. She really unnerved me. She went on and on that anyone w/ a stage 4 cancer dx could have hospice in a support role from day one. She said that any copay we made was unnecessary and on and on about how many benefits we missed out on. She said they cover chemo and radiation because it won't cure just help. Long story short...........Brian's insurance will only cover one of the 5 hospices in the area so all this information was unsettling and ultimately useless. This woman went on and on about how docs don't understand hospice and they are trying to change that. Then when I called the hospice we can use they prescribe to the more traditional view. NO TREATMENT allowed and must have less than 6 months to live. Well I was so upset I talked to our RN while Bri was having blood work done one time and she reported my concerns to the onc. He called me to come in and talk with him yesterday on his first day back from Turkey. I was scared to death. I thought I was going to get the 'final talk'. It turns out he was so concerned that we would think that he missied an option for us. Then he explained his take on hospice and on Brian. He said that w/ Bri's dx hospice is an option at anytime. BUT he does not think Brian is a good candidate for it because of his spirit. He said he never wanted to discourage Brian's positive attitude. He said Bri is a prime example of why he never gives time of death estimates. If he had given his opinion last Feb, he thought Bri had a couple weeks without tx and a few months at best w/ successful tx. He is shocked at Brian's resiliancy. He said Bri has exceeded all reasonable expectations and that his tumors are so complicated. He did not expect them to respond as well as they did to tx. The results just don't last. He is so surprised that his cancer seems to not spread just increase and decrease in size (his tumors are huge) and that his liver continues to function at all. Well, I think that Brian is so concerned w/ my well-being that he is worried that if he doesn't die w/ in my 12 weeks of leave I will end up in the poor house some day. I am worried that he is trying to be considerate and die on some kind of time shcedule. the night he thought he was dying he told me NOT to call his daughters because he did not want them to see any 'mess'. See, he is just so worried that he is going to inconvienence anyone that he is not relaxing at all. So here is today's plan (subject to change with changing conditions!) I am going to begin working again on 12/12. I will get help in as needed. We are going to live as though we are going to live. As I said.............things change by the minute. If he gets back to 20 of 24 hours in bed and confused I am sure I will change my mind.........I just want to do what is best and I am having a hard time knowing what that is. Please pray for us and if anyone finished reading this epistle.................thank you. Any advice or insight is welcome. Your comments never hurt my feelings, only help me to understand things better. Lots of love P Quote Link to comment Share on other sites More sharing options...
Treebywater Posted November 29, 2005 Share Posted November 29, 2005 Oh Pat... It's so hard isn't it... To know what is right? You're doing a GOOD JOB of figuring it out as you go. Bri is so amazing, and you are too. I wish I had helpful insight, but I don't. I do have prayers, and much, much love to offer. love, Val Quote Link to comment Share on other sites More sharing options...
bunny Posted November 29, 2005 Share Posted November 29, 2005 Pat, you are so present and articulate. what a lot you guys have going on. like I've said before, you are a woman of god, you live a god-directed life and, as such, you can not make a mistake. you know everything you need to know to care for Brian through each phase of this. I guarantee, his extraordinary survival is to your credit, as well as his and that adorable turkish doctor's. try not to worry. try to have an iota of faith in yourself, because we all have such incredible faith in your ability to be a partner and friend to Brian through this. and trust me, my briefs are NOT brief. heh. xoxo bunny Quote Link to comment Share on other sites More sharing options...
SBeth Posted November 29, 2005 Share Posted November 29, 2005 Well Pat, you sound incredibly strong to me and Brian's will is inspiring. I know how hard this is to just deal with the lung cancer, throw in the stress of FML, timing and hospice and it's not something most people could balance. It sounds like you have a plan, whether changing by the moment or not, it is a plan and hopefully this will give you some comfort and resolve. I'm with you every step of the way and we think of you and Brian constantly and pray for all of us here! Love to you both! Quote Link to comment Share on other sites More sharing options...
Kel M Posted November 29, 2005 Share Posted November 29, 2005 Hi Pat, I just wanted to say how special I think you and Brian are. The love you have for each other just transcends your posts and you are each battling this with incredible grace and dignity, not to mention humour. Brian's doctor sounds like a special individual, too. He's gifted the both of you by not being willing to provide estimates that are at best, statistical averages, and in no way reflective of particular people and their experiences. By doing so, he's freeing Brian to live each day and I personally feel he reminds the rest of us that today is all any of us really has. All that to say that the choice you've made is just fine for today, Pat. It's the best you can do today - and that has to be good enough. If and when you change your mind, you'll be doing the best you can at that time. I continue to pray for you and Brian every day. Kel Quote Link to comment Share on other sites More sharing options...
dchurchi Posted November 29, 2005 Share Posted November 29, 2005 Pat, unfortunatley this ugly disease does not come with a hand book, but I only hope I have done half as well taking care of Alan as you have taken care of Brian. I draw strength from you and Brian. many many prayers coming your way. Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted November 29, 2005 Share Posted November 29, 2005 I don't think any hospice would pay for treatments that were curitive. Brian's treatments were aggressive and most likely not covered. Hospice will pay for treatments approved by the doctor to make the patient more comfortable. Like radiation or chemo to shrink tumors that are causing pain to patient. I so admirer Brian's positive attitude. I hope he never stops fighting. Sounds like you have a plan now so hopefully you will have some peace over the holidays. I will continue to pray for you and Brian. Denise Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted November 29, 2005 Share Posted November 29, 2005 You've come up with a good game plan - work on living! Brian is such a trooper and you too, Pat. You folks are my inspiration. And your doctor sounds so supportive. That's truly wonderful. Keep pluggin' away. I'm rootin' for ya!!! Brian & Pat ((())) Joanie Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted November 29, 2005 Share Posted November 29, 2005 Just wanted to let you know that my prayers are with you. Cathy Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted November 29, 2005 Share Posted November 29, 2005 Pat and Brian, Your faith, love, and strength come shining through in each of your posts. So happy to hear you have a plan and will be fighting as long as you can, my prayers for both of you continue. Quote Link to comment Share on other sites More sharing options...
Ann Posted November 29, 2005 Share Posted November 29, 2005 Pat and Brian...I think you have a positively wonderful game plan going. It's great to concentrate on living versus the alternative! The two of you seem to always work things out so beautifully. I'm keeping steadfast in my prayers for you! Quote Link to comment Share on other sites More sharing options...
Ry Posted November 29, 2005 Share Posted November 29, 2005 Sounds like a plan to me. I hope he can get a happy medium going with the bowel situation. I like your doctor's attitude...you are so fortunate to have him. Hang in there. Rochelle Quote Link to comment Share on other sites More sharing options...
LynneH Posted November 29, 2005 Share Posted November 29, 2005 Lovely Pat, Thank you so much for providing an update. I think about you and Brian all day long. It sounds to me like you have gathered up Brian's concerns and his condition, your doctor's input, hospice's input, etc., and rolled them up into the perfect package that works for BRAT today. What a difficult process! You amaze me! I constantly questioned whether I should start FMLA or not. Like Brian, Jim always worried that I was taking too much time off from work and that concerned him, which wasn't good for his health. I would ask his doctor for time estimates, even though I know he didn't know the answer. I feared taking it too early or taking it too late. Then, the day arrived when Jim's doctor asked me privately if I could take time off from work. I knew it was time. Jim's brain met had compromised his walking ability, vision, and decision-making processes (pills, etc.) enough that the doctor must have 1) recognized that Jim needed someone with him, or 2) knew that his symptoms signalled a shorter time frame. Don't know which, but I started taking leave. I realize now that if Jim hadn't declined so rapidly at that point, that I may have had to re-evaluate my decision frequently........just like you are doing....a day at a time. Did I mention how amazing you are? Your hospice experience must travel across state lines. When I talked to several hospice groups, I heard that Jim's doctor doesn't refer early enough to hospice, that we should have been using their services before, etc. I think Jim's doctor feels the same way that your Turkey Man feels. They mull over their recommendations based on not only the patient's physical status, but also based on their desires, vitality, family support, etc. He is your doctor AND your friend and one size does not fit all. Even though I'm glad you got information from hospice, I wish it had been delivered differently. Just wanted you to know that you are not alone on this note. As others have observed, I have no doubt that you and Brian are more responsible for his amazing response than any chemo on this planet. I only wish we could bottle BRAT and sell it. But I don't know how to put a price on priceless. With so much love, Lynne Quote Link to comment Share on other sites More sharing options...
flwrjunke Posted November 29, 2005 Share Posted November 29, 2005 Pat and Brian, The 2 of you are such an inspiration to everyone here. I love what you said about "work on living". I say go back to work then just play it by ear. Your intuition seems good, so trust it. Prayers going out to both of you. Patty Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 29, 2005 Share Posted November 29, 2005 I agree with the onc -- keep encouraging Brian to fight. Tell Brian to follow Lucie's lead on this. Prayers for you. Don Quote Link to comment Share on other sites More sharing options...
melindasue37 Posted November 29, 2005 Share Posted November 29, 2005 Pat, I can feel the pain, turmoil, doubt, joy, and love in your words. You just want to do the right thing, but who really knows what that is?? The only thing you can do is go with your gut instinct and the wishes of Brian. You are doing a great job. Don't ever change or begin to doubt yourself. Just take it day by day. It might do you a little good to get out of the house for awhile. Who knows if it will work until you try it. If it doesn't work, then you can change the plan. Never be ashamed to ask for help. Ya know, I live close to you. I would be willing to help you in ANY way I can. Please don't hesitate to ask. If it is just running to the store for you...anything. I would love to help you. Stay strong Pat and please take a little time to relax when possible. When the going gets tough....the tough get going. YOU are a trooper and we love YOU! Warm Hugs, Melinda Quote Link to comment Share on other sites More sharing options...
shineladysue Posted November 29, 2005 Share Posted November 29, 2005 Pat, As I was sitting here reading this, I had to marvel at the inspiration that you and Brian have been to so many of us. There is no doubt , God is with you guys in this. You are going to be okay. Know that You are in my prayers always. Love, Sue Quote Link to comment Share on other sites More sharing options...
kamataca Posted November 29, 2005 Share Posted November 29, 2005 There is always a special spot in my heart--and my prayers--for the two of you. You both amaze me. It's good to have a plan...and give yourself the flexibility to work within it. Take good care of each other, like you always do. Kelly Quote Link to comment Share on other sites More sharing options...
Shar Posted November 29, 2005 Share Posted November 29, 2005 Pat, Just wanted to let you know I so admire your strength in coping with all of this. You are doing a fantastic job, inspiring. Love the fact you are going to live like you are going to live. Will be thinking of you both, Sharon x Quote Link to comment Share on other sites More sharing options...
annjael Posted November 29, 2005 Share Posted November 29, 2005 (((((Pat and Brian))))) I know it is hard to really decide what to do here. You are both so amazing!!! I think it is good that you plan to go back to work, and I think that will perhaps make Brian feel better about your Family Leave. It always seems better with some plan in place. I think you are wise taking it day by day, and work the plan accordingly. You and Brian have such strength, and a doc that really is a gem!! That is soooo important! ( I could tell you a few tales about Bills onc ,,,,ugh!!!) Still makes me crazy!!! Bless your hearts,,,,,and hang in there Peace, Annjael Quote Link to comment Share on other sites More sharing options...
jang Posted November 30, 2005 Share Posted November 30, 2005 ((((Pat)))) You are an amazing woman, and Brian is an amazing man! You are such an inspiration to me! Just do what your heart tells you to do....I know you will be okay. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 30, 2005 Share Posted November 30, 2005 Always thinking of you guys and praying for some positive changes. You postings always pulls at my heartstrings. You are incredible and your decision to go back to work will be good for both of you. Hopefully, Brian will feel more comfortable as he will not have that time line anymore. My candle shines bright for him. Please know you and Brian are in my prayers. I just wish I could do something. All I can do is pray with you and some many here. ((((((((PAT)))))))) Love ya guys, Maryanne Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 30, 2005 Share Posted November 30, 2005 Pat, As far as Brian's symptoms go you have described much of what I experienced while on chemo two years ago. The hyper moments along with the increased appetite were brought about by the high dose steroids. The constipation and diarrhea are what happens when we take opiates and chemo that causes the lining of the gut to be affected. It is horrible, and both a literal and figurative pain in the butt. As far as Hospice goes, I have a different opinion than most others on the concept of Hospice and the version that most people deal with today in this country. Hospice will NEVER be a part of my life nor my death. I suggest to you that you carefully research the Hospices in your area and take the time to interview them more than once. Ask for references not only from the surviving family members, but those patients in active Hospice. Just because a Hospice is good at meeting the needs of the family doesn't necessarily mean they are good at meeting the needs of client. Wishing you and Brian only the best. Quote Link to comment Share on other sites More sharing options...
nancy c Posted November 30, 2005 Share Posted November 30, 2005 Pat, you are both in my prayers. I will pm you. God bless, Nancy C Quote Link to comment Share on other sites More sharing options...
sharyn Posted November 30, 2005 Share Posted November 30, 2005 Dearest Pat, Insight? You are looking to us for insight? You my friend are so very wise, you know your Brian so well, it is truly an inspiration to read your posts. You take your cues from him and you act on what you know to be best... who could tell you to do more than that? What truly amazes me is that you are going to go back to work, when I know you would rather be there with Brian, but you are going back for his peace of mind. What an incredibly unselfish woman you are... God has blessed you with an incredible sense of "knowing" and unselfishness. God is standing right there beside you Pat, guiding you every step of the way... it is your incredible faith that has given you the insights and strength that you need. I continue to keep you and Brian in my prayers, I pray for Brians health, I pray for your strength and courage, and I also pray thanks for God allowing you to touch are lives... Much Love, Sharon Quote Link to comment Share on other sites More sharing options...
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