Getting Worse (UPDATE)

Prayers
Prayers being lifted for you and your husband, Penny.

Glad you updated us
I was also hoping for better news, but I'm glad you send your updates anyway - I wake up every morning and wonder how you folks are doing down there (we're up north of DC).

I'm glad his team haven't given up - they have probably seen people come back from worse, but they don't want to give you false hope.

I'm not in fetal position, but I did shed a few tears for/with you - I do hope things get better, as you really deserve a break.

Pennymac02 said:

Good News Update
I met with the transplant coordinator this morning. Mike is responding to dialysis, he said "hi Sweetie" when I came in. Crying while typing this. Anyway, the improvement is enough to give them hope. HE IS OFFICIALLY LISTED FOR TRANSPLANT.

His MELD score is at 40, which rates him on the list, and since 40 is as high as you can go, he's now at the front of the line. First available match is his. There is still a long road ahead, but this is the first positive news toward transplant we've had.

Now we wait with baited breath......
Penny

Glad to hear this
Glad to hear this good news for you and your husband Mike. When I read your post this morning, I did cry for you guys. I am glad he is responding to the dialysis and I hope he continues to improve. You are both warriors!

So sorry
Penny,
I cried when I read your update & wish I could be there to comfort you. I'm so sorry to hear that Mike's getting worse. This was a lousy year for so many of us. Let's hope things are better for us in 2011. Please stay by his side & tell him you love him. I"m sure he'll still be able to hear you. Bless you Penny. I'm here for you if you want to talk or send me a private message. "Carole"

DrMary said:

Glad you updated us
I was also hoping for better news, but I'm glad you send your updates anyway - I wake up every morning and wonder how you folks are doing down there (we're up north of DC).

I'm glad his team haven't given up - they have probably seen people come back from worse, but they don't want to give you false hope.

I'm not in fetal position, but I did shed a few tears for/with you - I do hope things get better, as you really deserve a break.

DrMary
You say in your post that you are North of DC. Can I ask where you are located? My husband and I are in PA in the Lehigh Valley (currently spending the week in the Poconos). It was supposed to be a good week for Mike because they gave him an extra week off so he could work in the Ski Patrol First aid room (something we have done for the last 15 years together and something he was really looking forward to doing). He worked on Sunday and did 5 hours yesterday, but does not have the energy to go today. He is devastated because he feels so sick.
I called his Dr. two nights ago and she called back right away. She called in two prescriptions for him; one for the violent hiccups (Baclofen) and one for the nausea (Lorazepam to replace the Marinol). The hiccups have subsided quite a bit so he is at least getting some food and liquids in (pretty good on the liquids but not so good on the food). The nausea is still pretty bad though, but not as bad as it was.
He feels so tired and is starting to lose his fight, which scares the hack out of me. We are only 54 and I tell him this is just another low point in the long war. I told him I really feel he is winning the war (which I do feel and hope I am right) so he can't quit because of this one battle.
Didn't mean to go on but it has been a bad week seeing him suffer so much and so ready to give up.

neverquit said:

DrMary
You say in your post that you are North of DC. Can I ask where you are located? My husband and I are in PA in the Lehigh Valley (currently spending the week in the Poconos). It was supposed to be a good week for Mike because they gave him an extra week off so he could work in the Ski Patrol First aid room (something we have done for the last 15 years together and something he was really looking forward to doing). He worked on Sunday and did 5 hours yesterday, but does not have the energy to go today. He is devastated because he feels so sick.
I called his Dr. two nights ago and she called back right away. She called in two prescriptions for him; one for the violent hiccups (Baclofen) and one for the nausea (Lorazepam to replace the Marinol). The hiccups have subsided quite a bit so he is at least getting some food and liquids in (pretty good on the liquids but not so good on the food). The nausea is still pretty bad though, but not as bad as it was.
He feels so tired and is starting to lose his fight, which scares the hack out of me. We are only 54 and I tell him this is just another low point in the long war. I told him I really feel he is winning the war (which I do feel and hope I am right) so he can't quit because of this one battle.
Didn't mean to go on but it has been a bad week seeing him suffer so much and so ready to give up.

Silver Spring, MD
Neverquit - we live in Silver Spring, MD, but at the most northern part of it, so it is really quit rural. Anyway, I know roughly where you are, as my husband's aunt used to run an inn in Canadensis.

We're familiar with the tiredness and nausea - and not quitting (he's 54 and I'm 51 and we both expect to live another 40-50 years). However, we did take turns quitting - when he started to give up, I was full of the "no, really, a few more days and you'll be feeling better" and when I was about to give up, he assured me that he was feeling stronger. I suspect we were both fibbing (hell, I know I was, as I was not certain of anything, but somebody had to be optimistic while we tried out yet another set of nausea drugs). But it worked.

It is tough when it hits you in the face and says, "no, you can't live your normal life." Doug certainly felt like such a weakling, especially after he lost 35 lbs in 4 weeks. At one point, his doctors were worried about his being home with only me to care for him - what if he fell? I almost demonstrated that I could easily lift him - with him being 140 and me being 160 (and I used to lift weights) but thought better of it. Glad I didn't.

We did get through our trip to the heart of darkness and he is getting stronger all the time - not sure he could what your husband did yet, however, but he does go to the gym and is working almost full-time. When the tiredness overcomes him, he still gets annoyed, but it's less often and less bad.

BTW, don't worry that he can't eat "food" - you can easily get 2500 quality calories in him per day with liquids. It just takes determination. . .

DrMary said:

Silver Spring, MD
Neverquit - we live in Silver Spring, MD, but at the most northern part of it, so it is really quit rural. Anyway, I know roughly where you are, as my husband's aunt used to run an inn in Canadensis.

We're familiar with the tiredness and nausea - and not quitting (he's 54 and I'm 51 and we both expect to live another 40-50 years). However, we did take turns quitting - when he started to give up, I was full of the "no, really, a few more days and you'll be feeling better" and when I was about to give up, he assured me that he was feeling stronger. I suspect we were both fibbing (hell, I know I was, as I was not certain of anything, but somebody had to be optimistic while we tried out yet another set of nausea drugs). But it worked.

It is tough when it hits you in the face and says, "no, you can't live your normal life." Doug certainly felt like such a weakling, especially after he lost 35 lbs in 4 weeks. At one point, his doctors were worried about his being home with only me to care for him - what if he fell? I almost demonstrated that I could easily lift him - with him being 140 and me being 160 (and I used to lift weights) but thought better of it. Glad I didn't.

We did get through our trip to the heart of darkness and he is getting stronger all the time - not sure he could what your husband did yet, however, but he does go to the gym and is working almost full-time. When the tiredness overcomes him, he still gets annoyed, but it's less often and less bad.

BTW, don't worry that he can't eat "food" - you can easily get 2500 quality calories in him per day with liquids. It just takes determination. . .

I am using your trick big time tonight as Mike is feeling so very bad that he really thinks he is not going to make the night. I told him that the drugs will kick in by tomorrow plus a bunch more stuff that I have no clue if I am right or not. I tried to get some Boost into him, but he didn't keep it all down. That stuff coats his throat and makes him more nauseated. Do you have any suggestions as to what I could try in addition to ice cream milk shakes, smoothies, and Boost/Ensure from a liquid standpoint?

The sad part is we would have headed home today (Nazareth) but Mike wanted to stay up here for Sunday morning. A very good friend of ours (and someone who was like a brother to him) who we patrolled with is having his ashes spread on the top of the mountain Sunday morning by his wife and son. This guy was only 52, the picture of good health and a runner and soccer coach who passed away while running his normal 6 mile run on 6/15 (that say, Mike found out in the waiting room right before he went in for his bone scan). And right before that (5/2) his best man in our wedding died unexpectedly. I think these things are also preying on Mike's mind.

A few close friends also dropped by after patrolling today and our one friend pointed out to Mike that he has seen him worse. In particular, in early August, one night, Mike was so weak and sick and hurting; and he told him he looks far batter than that night. And that is the truth. I know if Mike can stay strong mentally, he can get through this low period and can continue to see improvement in the PET Scans, etc.. It's just such a tough thing as you and Doug know.

Thanks for sharing your experiences as it is truly helpful. And I hope that the new year brings continued health and healing to you and your husband as well as to everyone else here.

By the way, we are currently about 5 minutes from Canadensis as we are staying at a condo we have at at the base of Camelback mountain. What was the name of the Inn Doug's Aunt ran?

DrMary said:

Thinner can be better - and think positive
Doug had the same problem with the thickness and coating with Boost - I found he could get 1 cup of plain 2% milk with a scoop of whey isolate down (the whey isolate was BlueBonnet - if you can find one without too many flavors, it would do as well). I added a few spoons of vanilla syrup (Toroni) as that didn't seem to bother him much - about 300 calories but almost as much as Boost plus and not as thick. You can up the calories with cream as each tablespoon of heavy cream is 50 calories. The fat didn't bother Doug and helped things go down, but you just have to do trial and error.

I also had to keep assuring Doug that a day or two without calories is OK - we are built to take it. If he can't keep Boost or milkshakes down, but can keep water/Gatorade/Pedialyte down, you are still OK for now. You don't want him to get dehydrated.

There's a topic going now on the H&N discussion board about drink recipes - you could also check that out.

Thinking positive works for both of you and it helps to believe that everything will be better in 12 hours.

(On the off-topic discussion - Doug's aunt ran the Pine Knob; I don't know if the buyers kept the name or not. It was a lovely area.)

Found the recipes
Thanks DrMary. I looked up the H&N discussion board topic on the drinks and there are a few good ones I will try (including the one you listed above). I am trying to make sure Mike takes a couple of sips of water/Gatorade/etc., every 15 minutes and that seems to be working OK. I am working to keep him positive and keep reminding him about a fellow stage IV gastric cancer survivor who told him they would bring him to the brink of death and then bring him back to life. I reminded Mike that it will be his mind that helps to bring him back from near death as attitude is huge.

We also had a surprise visit from my two brothers, a sister in law and a nephew. When our niece (and Goddaughter) called tonight to see how Mike was doing, I had a weak moment and started to cry and tell her how worried I was that Mike felt he was not going to make it tonight. She is away but evidently made a call to her Dad (my brother) and the cavalry arrived. I know how lucky we are to have such a great family. That really seemed to perk my husband up and he was able to take in about 10 oz of fluid between laughing as he listened to some of the old and new stories. He finally conked out at 9 and went to bed; but he seemed more hopeful as they reminded him how strong minded he can be. I do believe that he is being healed and just needs to realize it can be true. As you say, things will be better in 12 hours.

(Off discussion - It is still known as the Pine Knob Inn and is still about 6.5 acres of beauty and nature).

DrMary said:

PennyMac - still thinking of you
I hope things are continuing to improve - I'm glad the dialysis helped (it made a big difference with my aunt) and my whole household did the happy dance when I told them y'all were on the list for a transplant.

We all got nostalgic about NeverQuit and her husband managing to drink 10 oz of fluid - it was not that long ago that I was posting such things on CaringBridge as a high point of the day.

I'm torn between wanting to run down to Richmond and running up to the Pocanos to give you each hugs. Here's the next best thing: internet hugs.

Hang in there.

Internet hugs back
Thanks and Internet hugs back to you and Doug and to Penny and Mike.

Pennymac02 said:

Hugs
(((((((((((((Hugs Back)))))))))))))

His response to the dialysis has been nothing short of miraculous. They plan on doing it daily to keep the toxins under control while we wait.

Thanks DM!

wonderful news!
That's just an excellent thing!