Lou and I did make the trip to Hawaii - but, it was not a great decision! Unfortunately, Lou had already started declining rapidly before we left and that decline continued during the trip. After being there for a couple of days, Lou became so weak that he couldn't walk or do anything for himself! I had rented an electric scooter and he was able to run it after I got him on it - but.....there was not really any independence for him during the trip at all! And, he slept much of the time - just total exhaustion for him. I tried to persuade him to cut the trip short - but...he wanted to stay - so....we did! The trip home was precarious at best - but.....wound up being relatively okay and without incident. That was Tuesday morning - April 27 - arriving in Dallas at 5 a.m. Gabrielle picked us up at the airport and we came home and went to bed for a few hours. Wednesday morning - April 28, we went to the hospital for a CT scan, blood work, and Dr. visit. Even though the scan showed that the tumors in his liver hadn't really progressed - in fact, the CEA # was improved! - his liver is losing the battle / liver failure. His skin is yellow, his eyes are turning yellow and the Dr. told us that there's nothing more to do or try - it's time. Lou asked how long - Dr. told him 1 - 2 months - but...based on how quickly things have gone in the last couple of weeks - I don't see him lasting more than another 2 or 3 weeks maximum. (Lou has mentioned several times in the last couple of weeks that he won't be here long - so, I really think he understands and "feels" the truth - but....he also still speaks at times about the future!)
The hospice group came today to begin their care for him. It's the same hospice group caring for my father. After the nurse did a few tests, etc. and reviewed the blood report from Wednesday - she motioned for me to follow her outside. She told me to try to prepare myself for the daily decline that's going to take place over the next week or so. In her experience, Lou will become unconscious within about a week, so, she said that anyone that would want to see him or speak with him or any resolutions that need to be made need to be done VERY soon! She thinks once he becomes unconscious, he will remain that way until he passes.
We're both scared and sad about the whole thing - it's really difficult to accept - was very hard to hear the Dr. say "it's over"! Our pastor came to visit yesterday and Lou we all discussed funeral preparations, etc. I'm glad at least to know his wishes - we had discussed some points, but....discussed even more yesterday. There is definitely some "peace" in knowing what he wants and what he prefers! But....it's also surreal to know that it's all probably going to take place within the next couple of weeks! I can never be ready for him to be gone - but, I do NOT want him to suffer! And, I am so very, very thankful that up to now, he really hasn't had pain! He has had plenty of days of not feeling well - but....having actual pain - only a few times and not even enough for him to even take Advil - much less a real pain reliever! I pray for that part to continue and/or that the Lord will take him before he would suffer in that way!
If any of you want to speak with Lou , please call him or come by soon! If you want to write him a note - I'm printing all notes and putting them in a binder for him to read. It means so very much to him! (me too!) Lou's number is 972/839-8271 - mine is 214/725-7171 - house is 972/732-0688.
Both of us thank you again from the bottom of our hearts for all of the prayers and support for the last 18 months or so! WHAT a journey - not one I recommend - but...one that really is life changing and a real test of discovering more about what's truly meaningful in this worldly life we've had on earth! Definitely gets your attention and clarifies what's important and what's just "noise"! Lots of noise!!! We're very thankful that the Lord gave us this time together - surely helped us refocus and get our priorities reordered - just sorry it took something quite this drastic to get us to learn this lesson! Life is short!
Thank you for all the prayers, love, and support!
Blessings to all of you and your families!
Deb
Friday, April 30, 2010
Wednesday, April 14, 2010
Sorry for LONG Delay of Update!!
Very sorry for the long time since the blog was last updated! The last few weeks have been long, mostly sad / difficult and have required me to be focused on Lou and his needs. At the end of the day - taking care of Lou and keeping up with my work - there's just not much left - especially since things overall, have not been going well! Writing about everything is good for my soul - but....at times like these, also depressing to me because putting it in black and white seems so "final"! But....do want to get everyone updated - so...here goes!
After the last chemo in the last blog - the Dr. did change Lou from the Oxaliplatin to a different chemo drug called Irinotecan. This drug hopefully is slowing down the fast progression of the liver tumors, but....I don't have the latest CEA number yet! Should have them tomorrow. Unfortunately, the CEA number since February, continued to go up and up! But....2 weeks ago - while it hadn't gone down any - it had slowed significantly! It had been going up 500 ng/mL every two weeks - but....in the next 4 weeks after that, it only went up 150 ng/mL. We're hoping the number tomorrow will show that it's either stopped going up and/or that it's gone down some! The good news is that finally 2 weeks ago - the liver function numbers had started showing signs of improvement - first time for improved numbers here since everything started going up last fall! And....those numbers continued to go down again slightly when we got some of the numbers today. So, for that, we are quite thankful! However, the Irinotecan - which seemed to not cause too much of a problem for Lou in the first and second sessions as far as side effects - has now caused him to be quite ill feeling for the last 2 sessions and it has also caused him to have fairly significant diarrhea. He becomes so tired and lethargic that all he can do is stay in bed. Unfortunately, that has resulted in him not eating - and the combination of the diarrhea and not eating = additional weight loss and dehydration! To say that Lou is thin is an understatement - unfortunately, frail and skeletal are more appropriate terms. He's finally rallying slightly in the last 2 days after strong regiments of diarrhea medicines, pedialyte, probiotics, and eating more! Since the last chemo almost 2 weeks ago - he's been in bed or in his chair all but 3 days! When we went for the Dr.'s appointment today - it was decided to NOT have the chemo treatment scheduled for tomorrow. Twofold reason - we are supposed to go to Maui again next Monday. Since Lou has been so weak and unable to even walk much of the time in the last two weeks - the Dr. thought that having another chemo tomorrow with him in such a weakened state would probably only exacerbate the problem - and Lou had already said that he'd made an "executive" decision to NOT have chemo tomorrow because he is DETERMINED to get to Hawaii on Monday! (At one point, as only Lou could say - he told me that he was going to Hawaii even if "he had to crawl there"!! So...we're going to need prayers for him to continue getting stronger before Monday! Otherwise, not sure how we're going to make it through the flight, etc. and get to Hawaii!! We'll take the transport chair with us - had to take it with us today just to get him to the Dr.'s office because he's so very weak! But....hopefully, he'll make some good progress on gaining some strength back in the next 4 days since there will be no chemo tomorrow!
Of course, I'm concerned about what it will mean for this very ugly and aggressive cancer to NOT have the chemo treatment - but....truthfully - with Lou's fragile weight at the moment and how sick he's been - if he can actually gain some strength and weight over the next two weeks before the next chemo - it may be the better thing to happen! And....with his utter determination to make this trip - I know he's going to be fighting to be better / stronger! As with everything else with this insidious disease - no way to know what's best or right or wrong! Just have to pray the right decisions are being made! Of course, I want more time - but.....obviously, that's NOT a decision I get to make! So.....prayer is everything!
I really appreciate (and Lou does too!) - the continued prayers and support! The notes, e-mails, calls, visits - help both of us and we cannot thank you enough! The whole thing feels so lonely and yet, there have been so many blessings along the way too - such a mixed bag of emotions! Hope I'll have "Aloha" news in the next blog! That will mean things have improved at least for a while! The last few weeks have been overwhelmingly depressing / difficult for both of us - although - I try to have my moments in private - definitely serves no good purpose if I can't keep a more positive attitude for Lou when he's feeling so sick! Requires a lot of patience and prayer (and prayer for patience!!)!! The Lord has been so good to us / me in these quite difficult and extraordinary times!
Thanks again for your continued prayers, love, and support!
Blessings to all!
Love,
Deb
After the last chemo in the last blog - the Dr. did change Lou from the Oxaliplatin to a different chemo drug called Irinotecan. This drug hopefully is slowing down the fast progression of the liver tumors, but....I don't have the latest CEA number yet! Should have them tomorrow. Unfortunately, the CEA number since February, continued to go up and up! But....2 weeks ago - while it hadn't gone down any - it had slowed significantly! It had been going up 500 ng/mL every two weeks - but....in the next 4 weeks after that, it only went up 150 ng/mL. We're hoping the number tomorrow will show that it's either stopped going up and/or that it's gone down some! The good news is that finally 2 weeks ago - the liver function numbers had started showing signs of improvement - first time for improved numbers here since everything started going up last fall! And....those numbers continued to go down again slightly when we got some of the numbers today. So, for that, we are quite thankful! However, the Irinotecan - which seemed to not cause too much of a problem for Lou in the first and second sessions as far as side effects - has now caused him to be quite ill feeling for the last 2 sessions and it has also caused him to have fairly significant diarrhea. He becomes so tired and lethargic that all he can do is stay in bed. Unfortunately, that has resulted in him not eating - and the combination of the diarrhea and not eating = additional weight loss and dehydration! To say that Lou is thin is an understatement - unfortunately, frail and skeletal are more appropriate terms. He's finally rallying slightly in the last 2 days after strong regiments of diarrhea medicines, pedialyte, probiotics, and eating more! Since the last chemo almost 2 weeks ago - he's been in bed or in his chair all but 3 days! When we went for the Dr.'s appointment today - it was decided to NOT have the chemo treatment scheduled for tomorrow. Twofold reason - we are supposed to go to Maui again next Monday. Since Lou has been so weak and unable to even walk much of the time in the last two weeks - the Dr. thought that having another chemo tomorrow with him in such a weakened state would probably only exacerbate the problem - and Lou had already said that he'd made an "executive" decision to NOT have chemo tomorrow because he is DETERMINED to get to Hawaii on Monday! (At one point, as only Lou could say - he told me that he was going to Hawaii even if "he had to crawl there"!! So...we're going to need prayers for him to continue getting stronger before Monday! Otherwise, not sure how we're going to make it through the flight, etc. and get to Hawaii!! We'll take the transport chair with us - had to take it with us today just to get him to the Dr.'s office because he's so very weak! But....hopefully, he'll make some good progress on gaining some strength back in the next 4 days since there will be no chemo tomorrow!
Of course, I'm concerned about what it will mean for this very ugly and aggressive cancer to NOT have the chemo treatment - but....truthfully - with Lou's fragile weight at the moment and how sick he's been - if he can actually gain some strength and weight over the next two weeks before the next chemo - it may be the better thing to happen! And....with his utter determination to make this trip - I know he's going to be fighting to be better / stronger! As with everything else with this insidious disease - no way to know what's best or right or wrong! Just have to pray the right decisions are being made! Of course, I want more time - but.....obviously, that's NOT a decision I get to make! So.....prayer is everything!
I really appreciate (and Lou does too!) - the continued prayers and support! The notes, e-mails, calls, visits - help both of us and we cannot thank you enough! The whole thing feels so lonely and yet, there have been so many blessings along the way too - such a mixed bag of emotions! Hope I'll have "Aloha" news in the next blog! That will mean things have improved at least for a while! The last few weeks have been overwhelmingly depressing / difficult for both of us - although - I try to have my moments in private - definitely serves no good purpose if I can't keep a more positive attitude for Lou when he's feeling so sick! Requires a lot of patience and prayer (and prayer for patience!!)!! The Lord has been so good to us / me in these quite difficult and extraordinary times!
Thanks again for your continued prayers, love, and support!
Blessings to all!
Love,
Deb
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