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Posted 6/25/2013 5:56 AM (GMT 0)
Not knowing the reasons for removing, but it seems too early to remove port. The general rule is no potential treatment. A friend had a 5 year coming out party - five years no treatments . I am glad he,adoring well on Xtandi
Posted 6/26/2013 12:19 PM (GMT 0)
Hi Passages and nj,
I haven't been on, but been praying for everyone. I just gave my cousin the web sight as her husband has been diagnosed with throat and she just lost her sister to brain cancer.

My husband was actually considering the texotere. Just the fact that he didn't say NO right away was something. Doctor had put him on Zitega again. And he just finished 10 sessions of radiation (for pain) last week. He was getting really bad dizzy spells and was admitted to hospital for dehydration. While there, they did an untrasound on his kidneys. The cancer was found to be blocking his right kidney. His urologist was in and went over his options, he is in renal failure. My husband is done, as he said to the doctor "I'm giving up" He wants no treatments of any kind. Today the Hospice nurse is coming. We are starting with once a week, but I think its going to progress to more very shortly. His legs started swelling yesterday and this morning he is dizzy.

I'm scared, I don't know what to expect. I feel like I called hospice in for me. Someone who has been thru it and can help me to go thru whats ahead. I know God is handling most of this. I know I am not this strong. I'm not getting things done like I should be, but I'm doing. The hard part is he looks so darn healthy. Even his doctors can't believe him.

Hang in there, my prayers are with you. And God bless you for being here for me. Love, Hugs and Blessings Barb
Posted 6/26/2013 12:27 PM (GMT 0)
Barb, extra hugs. Haven't been through it all, but getting there. I too feel as if there is so much I'm not getting done. Hospice is for you too!! Please keep us up. Had to give a quick answer - Grandkids.
Posted 6/28/2013 4:54 AM (GMT 0)
Passages. Thanks for the hugs. Yesterday I was sitting on the deck having my coffee. I get a call regarding delivery of an oxygen unit. I thought the guy had the wrong number. I already have one. He informed me it was ordered by Hospice. Asked him to call me today because I knew nothing about it. At 10 a.m. the nurse arrived. She went over everything with us. My husband signed a DNR. That was a bit hard for me. Took about an hour and a half. Half hour later a fed Ex truck pulls up and has medications that were overnighted to us. Thats when it hit me. I had the strangest feeling go thru me. The realization, no more Hospital or Doctor visits. No more treatments, tests, etc. An hour later At Home medical show up with a nebulizer and a shower chair. I have never seen an organization work so fast and be so efficient. God is keeping me stronger then I ever thought I would be. Zanax helps. Have to try and get more sleep. Thank you, keep strong and take care of yourself. Prayers are with you. HugsmBarb
Posted 6/28/2013 7:03 PM (GMT 0)
Just an update...no fishing trip with grandson, I just don't think there is a safe way to get him in and out of the boat. Weather has been another issue, everyday has predictions of thunderstorms and rain at some time or another and I am very uncomfortable just thinking about it. So far no argument from him about going.
He is very weak, appetite has slowed. His legs are completely mottled unless he is laying down and showing signs of breathing distress with the least of activity. Pain is completely under control with his three times daily pain pill.
This part of the journey just really sucks, other ways to describe it but I am sure everyone knows those words. Some days I just want to lay in bed next to him but my mind won't let me. Other days I want to get away and my heart won't let me.
This too shall pass...
Posted 6/28/2013 10:01 PM (GMT 0)
To Jitters and Bjnemo and all the other women who are sitting watch, enduring,waiting,
We are strong, we women warriors. We can do this as well. We birthed our babies and let them loose. We can help our men folk to leave with peace. I know it is not easy, because I had to do this at one time, when my husband was thirty and my babies were two and three, hanging on my legs while I tried to ease the cancer pain and administer the morphine shots in my inept hands. You can do this. You can sit and hold hands and read and laugh and play some music. You can remember, or just watch. Your care will not change what is about to happen, now or in awhile, but you will always be proud that you were there and did what you could.
The end is not that hard. You will be ready for it to come, and thankful it didn't go on any longer. All the wishes and hopes and prayers will not alter the future. We have to accept that cancer has a mind of it's own and sometimes there is no last minute reprieve.
I do not want to do this again, hopefully not, but I don't know. If the time comes I will be there, because that is what we do, we women.
Posted 6/28/2013 11:03 PM (GMT 0)
Thank you, Beejane, for those words. While I did not birthe any babies, I do feel the strength of your sentiment.
Days I don't feel strong at all. I'm learning not to look ahead too far because then I really can't be there for him.
Pain is somewhat under control with 125 fentanyl patches. We may ask to up this when we are back from vacation.
We are going to look into Comatriq (XL184) when we return - our Boston doctor says this is an appropriate medication to try. Thanks to Zimac for helping light the way for this.
Off on vacation on Sunday where we will be unplugged and relaxed, I hope.
Jitters, my thoughts and concern with and for you. It is hard. It does suck.
Bjnemo, hoping this new phase in your lives helps you. I have a feeling I will be there someday but I am thankful I don't know when.
Passages, keep up the updates.
Holding you all in my thoughts.
Posted 6/29/2013 11:02 PM (GMT 0)
Hi All, I think the radiation has helped his pain. Edema worse in both feet, legs and arms. Called Hospice just to ask if I could up his water pills. They came out and checked him, called his doctor and had it increased. The nurse sat and explained to me how to use the med kit that was delivered. Everything was good until she left. I have never had such a strange feeling go thru me. My whole body and I felt like my head was filled with fog. Not light headed or dizzy just can't explain it. Thank God my sister stopped by. I took a zanax and after while felt better. I think I was just so overwhelmed and scared. Last night I slept, not from the medication but because the medication relaxed me so I could sleep. I have only been getting 2 1/2 to 3 1/2 hours of sleep a night. Girls you have to take care of yourselves.. Jitters, lay down next to him and just spoon for a while. It helps. I can't because my husband sleeps in a recliner. But I get all the hugs I can when he's up. nh enjoy your vacation. Take in everything you can. Want to hear about it when you get back. Passages Hugs, you have to ask, he's yours you have a right to know. Love, Hugs and Prayers to you all. You have helped me in so many ways. Bless you!!!!
Posted 6/30/2013 1:04 AM (GMT 0)
All, I had an almost done long response to all of you - well thought out, etc. and fell asleep last night and lost it all. Thinking of all of you. Won't do as well today. Really tired. My husband did his stint at the museum center and lasted the whole day. He did have some rest time. Some of the taff and volunteers made a special effort to see him. He didn't realize that
Bjnemo - glad hospice has been good and radiation working. Our Dr. was to put in an order for palliative care, his nurse still hasn't. My daughter works with that agency and knows them and knows the order didn't go through yet. Not sure why his nurse is so uncooperative. I did ask for a 'script for Xanax last time at Dr for just in case. Cried when I asked - hate to ask for anything for me.
Nhwife, glad pain patches working. What's the XL184 and what's up w/Zimac? Think of her often.
Beejane - your words are good. I hope you're right and hope you don't have to do it again!
Jitters - I get the just stopping and just lying there beside them. Right now he's fighting again and trying to do, but it takes do much out of both of us. The last time my granddaughter was home from West Point she asked him to take her fishing like when she was younger - not from a boat. I know she is going to feel so devastated if/when he can't make it to her graduation next year. We were thinking he might, but .....
Tednsal, smo1 and ALL I hope it's been a smooth few days.

Thanks so much logo.
Posted 6/30/2013 4:23 AM (GMT 0)
Ladies, I try to check in every day to see how everyone is doing, most days, it seems I don't get a reply in, but I do think of each of you often and say a BIG prayer for each of you and your hubbies. It is so hard to see how each one is struggling with different things. I feel like we have so much in common, just in different stages. My husband continues to be about the same, which is real good compared to most of you. It makes me realize all the more how we need to get in as much "good" as possible as he is in this stage. Just hoping for rest for each of you, wisdom in the decisions you need to make, good times on vacations, and the ability to choose what needs to be done, and what can wait! My heart aches for each of you and I feel blessed to be a small part of such a wonderful group of caregivers! Have a wonderful rest of the weekend!
Posted 6/30/2013 4:54 AM (GMT 0)
Passages,

A short update - my husband started a new drug called Cometriq after experiencing terrible back pain. He has been on it for 5 weeks and it has helped him. He went from taking Oxycodone every 4 hrs. to not needing any pain medication at all. He was walking with a cane and is no longer using it. We go for bone, CAT, PET scans and MRI's of spine on July 10 to see if it's working. PSA is high (122).
This drug doesn't effect PSA level which we are not happy about.

It's been a long tough road so my time is limited on HW. I think of everyone here often and pray for peace, courage and strength for all. My heart breaks for our hubbies and for the women warriors who have to endure this horrific situation. Stay strong, you will make it through.

Blessings to you and your hubby.

Zimac
Posted 6/30/2013 4:07 PM (GMT 0)
Went out with my daughters to local bar last night, I felt like I was cheating on my hubby, even tho he wanted me to go. Had so much anxiety it was very hard. Did have some good laughs with family and friends, didn't drink so I could drive. Just kept texting home asking everyone to keep checking on hubby. He slept all day again, and will again today. He told me he understand its part of the "process" but feels quilts he is leaving me to keep my mind busy. It's all I can do do help get him out of his recliner when and if he gets up to eat, thinking it may be time to get hospital bed from hospice. Amazed at his lack of pain. Thinking I just need to roll over and sleep with him today.
Going back to throat doctor tomorrow, he's wanting to do a biopsy of my neck muscle now looking to see if its sarcoma, just throw me more stress and then to gastro to see if he can scope my throat while I'm under to see how much damage I have on my throat from acid reflux from not eating...things just keep going on and on..
Ladies we can do this..I keep telling myself this every day, I know I can just wishing I was feeling better..hate being a control person, so much of this is out of our control, I guess all of it..
Posted 6/30/2013 11:51 PM (GMT 0)
Zimac - again so glad to "hear" from you!! I guess the news not good, but better than my active imagination :-). So glad for pain management. You getting any time - taking any breaks to be creative? Special hugs and thanks for update. It does matter.

Jitters, I do get that checking. We're not to where you are, but kept checking on him yesterday and today while he wasn't directly with me. We are both blessed than with the lack of pain. You hadn't mentioned your throat/neck; so felt maybe should leave it alone with all you are going through. Yes, we can do it, meaning you too. It is so very hard not having any control any more. Maybe the next time ....make a next time and don't be the DD...you can relax more. Just a little bit :-).

Really glad for updates.
Posted 7/1/2013 2:59 PM (GMT 0)
Jitters you have to take care of yourself. I know its hard. Just even fruits, raw veggies, Bars, etc. Your body needs you to eat. I have been keeping bowls of different fruits in fridge just to pick. It helps the reflux. I also am now taking prilosec. Stress can do so many things to us. Your going to do Ok at the throat doctor, your stress level is just so high. Give it up to God, he will always be there for you he carries us thru all this. And your right not being in control is the hardest thing. Not being able to fix him is worse. Keep that Glass half full, we are all praying for you. Hugs, Love and Prayers Barb
Posted 7/1/2013 11:46 PM (GMT 0)
Jitters - how did throat Dr. go?
Posted 7/2/2013 3:17 AM (GMT 0)
Throat doctor is scheduling me for an open biopsy for a mass on a throat muscle that continues to grow. The fine needle biopsy did not get a cells because the mass is on a muscle. Will most likely wait until after my husband passes. Doctor said throat is very very irritated from the reflux, got me a appt with a gastro doc in a week.
He also said, and I already knew,that not eating is causing for reflux, that losing so much weight, the stress etc has most likely thrown by entire body chemistry off. I have to get a prep op physical and entire blood work up including vitamin levels. That I sound severely depressed....really???? So friends, I am working on myself, going to force myself to eat, he doesn't want me to start any new meds or supplements until blood work is done,mainly work on eating and resting for the energy I need to take care of hubby..and trying to learn to ask for help from my kids.
Hospice nurse comes tomorrow so we will know better where he is on the journey leaving us. Not sure if I ever said, I had lap band surgery 4 years ago and have lost about 125 lbs, and there is no doubt in my mind or the ENT's that the process of losing the weight has added more complications to the reflux problem.
Thank you everyone for prayers and concerns, I will pray myself and ask for the strength to get through this in a healthier way.
Posted 7/2/2013 3:29 AM (GMT 0)
Oh Jitters, hope you can trigger in your head you need to take care of you....I get it, it's hard. Losing weight now and it's not a good loss - that would be harder for your head to accept.
Hmmm, depressed - can't figure that one out - said with extreme sarcasm.
So what did the Dr. think about waiting for biopsy? Did he give an outside timeline that you can wait? Just all too much. Hopefully Gastro will help with input, but the hospice crew should be able to help.
Definite prayers - meant deeply, not just as a phrase.
Posted 7/2/2013 3:39 AM (GMT 0)
To all the women on this thread,
I don't have anything particularly practical to say other than to offer my simple encouragement for your ceaseless labor on behalf of your men.
Southern Comfort
Posted 7/2/2013 3:42 AM (GMT 0)
Southern Comfort, just stopping in helps to know that someone else is checking in.
Posted 7/2/2013 4:22 AM (GMT 0)
I do stop by periodically to see how you ladies and your hubbies are faring. In the face of the tragedy of this disease you all exhibit such courage, strength, perseverance and love that it blows me away. There is little that we can do on the sidelines but draw inspiration from your bravery and offer our prayers and well wishes.
Posted 7/2/2013 5:02 AM (GMT 0)
Well Bluebird. You fight because you have too, but thanks and agree many are exhibiting what you have suggested. It's knowing many of you surround us with concern and care; but also hopefully many will be helped by our journey .
Posted 7/3/2013 4:26 AM (GMT 0)
Passages..biopsy is scheduled for 7/25, and I see gastro on 7/9. Really hoping he can give some insight into any relationship between reflux and lump on neck and maybe even do scope quicker so biopsy won't be necessary.
Hubby's vitals are good, but still sleeping about 22 hrs. Sounding very congested tonight, nurse is coming back tomorrow with an aide to shower him, he finally gave in for help, I just couldn't do it any more. She is also bringing some type of belt for his waist so I can help him out of his chair should he decide to sit up instead of sleep,not sure that is going to happen though. Thank you everyone for thoughts concerns and prayers.
Posted 7/3/2013 9:23 AM (GMT 0)
We returned early from our vacation. He is in excruciating pain, can barely walk now. We have an appt this am - asking about comatriq but also palliative care. I am scared that this is getting bigger than I can handle. Some moments are good, you feel well this isn't too bad. Then come the tears and pain.
We will walk out of that office this morning with a plan - go on Comatriq and hopefully set up palliative care. Our doctor alluded to this last time and we weren't ready. Now we are.
Right now I am wondering how in hell can I get him down the stairs this am safely?
All of you, thinking of all you on this journey with me. And Jitters, I can't even conceive having the medical issues you are having. I am eating OK, have to because I am diabetic. What pain med is your husband on? 3 pills a day?
I will update when we are back.
Southern Comfort and Bluebird and anyone else checking in and offering words of support, thank you. This little band of women needs that!

Post Edited (nhwife) : 7/3/2013 4:32:12 AM (GMT-6)

Posted 7/3/2013 11:35 AM (GMT 0)
NHwife, I do understand. Jitters getting there.

I guess the vacations are just too much. He's talking at another one in September farther away. We were supposed to have an order in for Palliative care after last visit, but hopefully its been done after yesterday's visit. I want to see where they recommend he be in the future for sleeping, than I can start putting house back together ...... Maybe.

JitTers - 22 hours!! That's a lot. Geri belts are not magical, but certainly very helpful. Have used them with my mom and a couple of friends. Glad he's (and you) have relented to more help. Have they discussed setting him up downstairs or getting a lift for stairs? Praying for your strength for the Dr, etc.

Take care all.
Posted 7/3/2013 3:55 PM (GMT 0)
Just a quick pop in to tell everyone that I am thinking of them and hoping for the best.......whatever that is.

Nancy
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