Mr kukukajoo is HOME!!!

He is still very sick... A long road to go now and I still very worried about him.

His pain is still very severe despite enough meds to knock out an elephant, his nausea is so bad despite 2 medicines for that- he just threw up.... He is sweating bad despite it being 72 in here. Still isn't really eating.... I think he has had a little milk since getting sick.

I did find some drink things at the store which contain 42-45 grams of protein in 3.5 ounces.... They have liquid protein shots too that have about 15 grams of protein per ounce. I found them on Amazon doing a search for "liquid protein shots"

I can tell his is more comfortable here than the hospital and he no longer has to wait for his medicines and all that stuff. I went a little overboard at the grocery store after I got him settled in to have a variety of things that he would maybe eat.

Tomorrow is a runaround trying to get prescriptions changed to larger quantities so we don't have to pay more than one copay each a month- this is killing us financially- and also getting his Zofran dose adjusted as they accidentally put it too low.

His wound vac is disconnected as they couldn't get one delivered today- hoping tomorrow and I will be calling first thing in the morning. The woman who answered the phone wasn't very helpful to me today at all, let's hope that tomorrow is better. He also needs the vac dressing changed tomorrow which may not happen, or we may have to travel to another location to have it done- not sure yet.

Still working on getting things in place for home care, but that will come, plus making followup appts.

We met with the oncologist yesterday, a different one but she works with ours. She was excellent. They don't think cancer could have caused all the adhesions that started this all up, nor do they think that the obstructions were caused by cancer- they have absolutely no clue. He wasn't on steroids long enough for that to be the cause, they don't think the chemo was the cause either. HUGE mystery we may never find the answer to. We forgot to ask about the spots showing on both kidneys now.... She did say this is an aggressive cancer though based on PSA of 74 at diagnosis then went up to 115 before he could start treatment. She agreed a great response so far based on what we can see of the lungs on the CT scans he had done of his abdomen and that we can assume that the remainder of his lungs had just as good a response. No need for another CT to confirm. She is ordering monthly PSA and testosterone tests for the time being while we see where things go. Chemo is out for a good 6 months at least, maybe longer. Then when they do start back up they will do it at a lower dose at first. She also said that their new protocol is the taxotere with the ADT up front for 6 months based on the newest study. She hadn't realized that we were the ones who provided that to the other doc, and we were pleased to know that we changed the standard of treatment for the better for all patients coming after us!

We will follow up with nutrition- they said on discharge they want him to have 150-200 grams of protein a day..... I have no clue how to get that into him considering after 2-3 bites of anything he is full, or if he drinks any liquid. I fear he will waste, or get dehydrated, or both. He is already so frail- thin, gaunt and so very weak.....

So he is home in the comforts of home. Very quiet but seems happy. Has his music, his TV, and I put the hospital bed right up against our bed at the same height, so we are sort of going to be sleeping together. I have a feeling he will spend a lot of time on the sofa though.

He isn't out of the water- doc warned us this wound could still dehisce, his blood counts are still very low but very slowly rising which I hope they do. My fear is now that he is off the TPN IV nutrition that he was getting that healing will slow and his blood counts will dip even more- he is borderline for a transfusion right now. His white count (indicates infection usually) is totally normal. He had his last infusion of the heavy duty nuke-em-all antibiotic before he left the hospital.

I suppose that's it for now. So much to do to get him settled, and so much to get him on road to wellness still. BUT he is home, and I so happy for that!

Wow- what a lot to go through. How exhausting all this must be for you, like being on high alert without a break. It's hard to get anabolism without testosterone, but hopefully that will happen even if it is slow. What a struggle this has been!

- Allen

Krissy, glad to hear that he is home and we continue to hope and pray for the best.

Jim

As the Beatles said in "I Am the Walrus": I am he as you are he as you are me/ And we are all together."

I'm assuming your moniker is a reference to that song.

We ARE all together in this fight against prostate cancer, and we ARE all with you in this fight to regain Mr. Kukukajoo's health. Thanks for the good news update.

As Peter said, milestones are important no matter how small. But this is a great milestone. Baby steps first, walk before you run, etc.

Hopefully each day will get better, especially since he is now home.

Good luck to you both, you are doing a great job with all that has been thrown at you both in a short time.

Bill from Florida

Great news! Praying each day continues to get better.

Take Care,
Barb

Krissy,

So sorry I missed your call! I was happy to hear the voice mail though.

Hang in there, Krissy.... You've been beyond totally awesome during all of this. I know you have it in you to find a way to get that protein digested. I know you will. :)

Someone here once described me as "A cat on a hot tin roof." Imagine my surprise when I found out that I have sister from another mister that showed up here! :)

Hugs and love sent your way...

Thanks for the new update, and for the improvements. If you get a chance, read my 24,00th post dedication, you may see a surprise!

David

kukukajoo -

Along with Purgatory's dedication, here's another one that will hopefully bring a smile to your face, which would be a good thing right about now.

/www.youtube.com/watch?v=Ap6kSV_U45o

Best wishes for you and Mr. Kukukajoo.

Thank you for the video- mad me smile!!

I am glad I ran out of time to post an update on Paul as he wasn't doing very well. seems small gains come after some troubling times. His nausea and vomiting were not under control at all. BUT his PCP prescribed Reglan and that seems to be doing the trick. He slept all day yesterday.....At one point his mouth was gaped open and so were his eyes- rolling in his head. Scared me to say the least. Anyone knowing end of life stages will understand what that could mean.

Maybe that sleep helped, a long stretch of restorative sleep? Regardless this morning he actually got up and brought me coffee and let me tell you it was the best tasting cup ever!!

He has a follow-up Monday morning and labs are being drawn today, including PSA and Testosterone. we may have results over weekend I am not sure how long they take but hoping its gone down more. The next Lupron he has in Sept he will try the 1 month dose to see if it results in a reduction of the side effects. If not, he may go to the 4 month injection. Sept 2 or 3 is the followup with Oncology which was actually supposed to be in conjunction with chemo appt.

My work has been amazing. My co workers, my manager and apparently the regional director as well. He had me in tears yesterday when he told me to remember I have a big family right there to lean on and count on! I can't tell you how incredible they have been through this. I know how lucky I am as well, since other places wouldn't be so understanding or helpful at all.

One worry is coming up with money to get my youngest in college. She is short funds and I can't even help like I usually would. Trying now to make a miracle happen. I hate seeing her so stressed and upset, but like everything I will figure this out somehow!!

His weight- he's only lost 30 lbs through all this. Not sure how much is actually weight on still due to the abdominal distention so it may be a little more.

Wound is healing well. Certified wound care nurse is coming with the regular visiting nurse today at lunch. I will come home to help as they want me there- the regular nurse wont come unless I am there to help. Its a difficult wound to dress for the vac due to the suture clamps or whatever you call them... They are plastic train tracks across the belly with a cog sticking up in the middle.... Pain in the butt but keeping his insides where they belong and preventing the underlying sutures in place. He says they sutured his muscle layers REALLY tight this time, and I sometimes think that is part of his nausea and discomfort.

Hope everyone has a great Friday and welcome to the weekend!

PS- Mrs Worry- we never had to buy the sheets, found one fitted sheet of regular twin and I think I have one or two more somewhere here that fit as they didn't bring the long bed, just the regular. I will try to unpack more this weekend but then again I may just relax- I know mowing the lawn has to get done early one morning before the high 90s temps set in.

Today he had a wound vac dressing change so isn't doing good at all.

BUT... his PSA is 0.9 0.85 (they ran twice with same sample for some odd reason- two orders from different docs and nobody noticed). His testosterone is 0.1. Two months after ADT, and taxotere was June 30.

I will check my email!

MrsWorryWart,

So glad Paul's PSA is better!!

As well as others, every day, I call Paul's name to our Lord. Yes, there are so many praying for Paul and others here on HW.

I've heard my dear grandma say: Prayer is the key to Heaven and Faith unlocks the Door!

Dave

Krissy,

I've been praying for Paul and you, and am so sorry for all that you both have had to endure. I have had the pleasure to meet Mrs. Worrywart, and like you she is a strong fighter for her man. I have also been fortunate enough to have met JNF, and what great guy he is. I'm so glad that they, and others on HW have been there for you. You are a good writer, and your sharing of some of the real time experiences are a true value to this forum. I am so fortunate to have someone like you by my side. Sometime it takes me hours to compose a post, and I can't take that time away from love, so I don't.

Wishing you both a great steak dinner!!!!