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Old 07-13-2012, 06:47 PM   #81
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I just finished reading the entire thread - you've been through so much in the past couple of months! I just wanted to add my support and prayers to you and your hubby.

Did he get into a trial? Is he able to get the Valium to keep his seizures under control still? I hope so, both counts.
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Old 07-14-2012, 02:42 PM   #82
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Oh Rainsong I just found out about this thread today, I'm so sorry you both are going through this. Keep strong and know we are all sending positive thoughts/prayers your way. You sound like a very lucky couple to have each other. Keep enjoying your hugs and kisses!
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Old 07-14-2012, 03:31 PM   #83
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I hope you and Butch are doing okay, Rainsong! Thinking of you both and sending some healing thoughts your way...
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Old 10-08-2012, 08:30 AM   #84
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Sorry it's been so long since posting an update. I think I've been avoiding facing writing about all this.

Butch continues to maintain a halfway decent lifestyle, taking Abby for long walks, working in the yard and house, cruising the internet, but he's also bored silly since he's so used to being able to hop in his van to run errands, get out of the house, etc. Now he has to depend on me all the time.

Treatment continues with his third round of chemo starting tonight. Seizures also continue, usually one per day though there was a day two weeks ago when he had four in four hours. The weird thing is that when he's taking the Temodar (chemo) he doesn't have seizures for the entire five days.

The local neurologist doesn't want to prescribe the Valium for his seizures, doesn't think they work, so we depend on his VA doctor to write the script. The local neurologist did write a prescription for rectal Valium, to which hubby asked, "That should go over well when we're eating out." Since it was a "normal" script rather than VA, I took it to our local pharmacy. They didn't have it in stock but could have it by the next day. Okay....walked out toward car only to hear someone call my name. Turned around to find the pharmacist hot on my heels. She asked me if they pharm. tech had told me the price. Nope.

$297

With prescription card discount.

Normal cost is almost $700.

Cancel that order.

If, down the road, we need something like this, we will ask the VA neurologist to prescribe it.

Earlier I promised to post about clinical trials but I'm just not ready to go into it yet. My apologies.

And now I have to try to find Sammie's thread to post the email from Mark.

Thank you all for your kind thoughts, prayers, wishes and support. It means a lot.

Rainsong
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Old 10-08-2012, 10:04 AM   #85
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Thinking of you and Butch.
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Old 10-08-2012, 11:47 AM   #86
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Hey RS,
Isn't this a horrible road we travel? I am relieved he can get some treatments close to home but the costs are outrageous. One of my 24 hours after chemo shots cost 4995.00 for just one.

I wonder why the neurologist didn't want to continue the Vallium even though it was working But am relieved you have a DR to order it. I had to laugh (thru pain) at Butch' remark about the suppository when eating out. It's good he can have a sense of humor.

Both of you are in my thoughts and wishes all the time. I also know how hard it is to get the energy to post. Take care and I am hoping for the best. You may get those 10 years as one never knows for sure. Love you.
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Old 10-08-2012, 02:13 PM   #87
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Quote:
Originally Posted by Samantha View Post
Hey RS,
Isn't this a horrible road we travel? I am relieved he can get some treatments close to home but the costs are outrageous. One of my 24 hours after chemo shots cost 4995.00 for just one.

I wonder why the neurologist didn't want to continue the Vallium even though it was working But am relieved you have a DR to order it. I had to laugh (thru pain) at Butch' remark about the suppository when eating out. It's good he can have a sense of humor.

Both of you are in my thoughts and wishes all the time. I also know how hard it is to get the energy to post. Take care and I am hoping for the best. You may get those 10 years as one never knows for sure. Love you.
Sammie,

Today has been exceptionally difficult for me, probably due to the cold, rainy weather we're having but it could also be because I've been doing more research. Oh, there's "hope," in a few years. Unfortunately most GBM patients don't live that long.

Avastin is a possibility but it is prohibitively expensive ($100,000 per year) and many insurance companies refuse to cover it, let alone the VA. because it does not cure, only prolongs life for a few months.

Anyway, Butch and I are both hoping you start to feel better soon and that your surgery is a complete success.

Love and hugs to you and Mark.

Rainsong
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Old 10-09-2012, 12:15 PM   #88
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Take care. My heart aches for both of you. Life isn't fair as we know. Are there any trials going on in other countries? I never thought I would say this, but when push comes to shove, we do what we can to survive. It takes years and years for drugs to get approved through our cumbersome FDA system. i know you do a ton of research. Maybe your kids tcould do a huge fundraiser for Butch for the expensive meds here also. I will be the first to donate.

Know that we are all pulling for Butch. Love ya.
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Old 10-30-2012, 10:25 PM   #89
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Sending healing thoughts your way for Butch, sure wish I lived close enough to bring you a hot meal or something. Thinking of you both now, thanks for the update, sorry I just now read it!
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Old 10-31-2012, 08:03 AM   #90
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Sending more good thoughts to you and Butch.
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Old 11-01-2012, 08:29 AM   #91
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The kids asked about Miss Rainsong at dinner last night. Bbaby knows that you are the one who sent her favorite blankie and the older kids know Butch isn't feeling well. Just know you, Butch and the entire family are constantly in the thoughts of my family.
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Old 01-03-2013, 08:00 AM   #92
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Quick update.

Dh is finishing his 6th round of Temodar this week. Not sure if the oncologist will prescribe further rounds or not as it doesn't seem to be helping much.

At the end of Oct. dh was admitted to the hospital as a result of a grand mal seizure and aspiration of vomit (liquid). A new MRI showed the tumor had re-grown and it is inoperable. This is what is so horrific about this type of cancer. No matter how much the doctor removes during surgery (our neurosurgeon removed all visible tumor), there are always microscopic strands left behind that regrow sooner or later.

We'll go back to the VA hospital in February for a visit with the oncologist and neurologist for another MRI. No further visits are scheduled with his neurosurgeon or local neurologist. No clue what happens after this.

I think the hardest part of this is watching as a little piece of him disappears every day. Not being able to spell a simple word, or do a minor math calculation, an area where he was always proficient. The activity level is much less than even right after his surgery. Five minutes playing with the dog wears him out. Then there are days when he works rings around me.

Erosion at a noticeable rate is the best way I can describe it.

We did have a lovely family-filled Christmas and he enjoyed every minute of it!

Rainsong
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Old 01-03-2013, 08:10 AM   #93
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Rainsong I'm so glad you had a lovely Christmas and so heartbroken you both are going through this. Sending you lots of cyber hugs - you are truly one special lady to me and I wish there was more that I could do than keeping you in my thoughts.
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Old 01-03-2013, 11:22 AM   #94
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Love you, Rainsong. So glad Christmas was lovely for you all. We'll be keeping hubs in our thoughts and you too, of course.
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Old 01-03-2013, 04:29 PM   #95
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I have kept up with your posts on this and my heart sure goes out to you. I'm 72 and my husband is 75 and I feel so fortunate with our health. Sure, we have loads of arthritis, including replacement surgeries for both of us, and we both have heart problems, but so far we've been able to have something done about our problems. A feeling of "what's next" or lack thereof would be more than overwhelming. I wish I lived near you and could come over and give you a big hug.
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Old 01-03-2013, 05:32 PM   #96
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I am glad you had a nice Christmas and I hope you can have many more. I know how hard it is to watch your partner to lose ground day by day. You and your DH are in my thoughts daily. I wish there were a magic pill or treatment for him. You are facing a struggle too along with your DH. Mark is losing ground slowly too and I know the helpless feeling you are going through. I am hoping your DH is not in pain as he goes through all the chemo etc.

I am heartsick reading your post. Take care my friend and keep us posted. I care.
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Old 01-03-2013, 09:31 PM   #97
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Your courage in the face of this adversity is amazing. I admire you.

Although we have never met, I feel I know you. I continue to hold you and your husband in prayer.

Sending you a big hug via the internet tonight!
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Old 01-03-2013, 10:00 PM   #98
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Awe, I am sick about Butch's tumor's regrowth! It sucks.....

I will keep you and your entire family in my thoughts, I am glad you all got together for Christmas with your whole family.

Hang in there and remember to ask for help when you need it, okay?
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Old 01-04-2013, 11:42 AM   #99
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Rainsong, Just found this thread - so sorry for you and your husband - and wish I could be of some support to another military family in your time of trouble. Sometimes life sucks and this is one of those times. All you can do is what you can do - take care of yourself as best you can, and love one another. sending warm healing thoughts and gentle hugs.
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Old 01-04-2013, 04:16 PM   #100
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Rainsong...I am sorry to hear about your husband.
All of this sucks big time.
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Old 01-08-2013, 11:11 AM   #101
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So sorry about the tumor regrowth. You and your family are in my thoughts. You have been on my mind as I recently learned a few of my son's friends will be attending Frostburg next year.

I'm glad your holiday was a happy one.


I don't know what else to say except.... cancer sucks.
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Old 07-19-2013, 02:35 PM   #102
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We went to the VA hospital Tuesday to get the results of hubby's MRI. Considering the decline he's been in since Feb., we were not surprised with the results. Significant progression of the cancer with midline shift and encompassing more of the frontal and parietal lobes as well as extending into the ventricular system.

The oncologist offered further chemo treatment but dh declined it. As of yesterday, he is on hospice care. We've been inundated with ambulatory accoutrements, medications, skin care goodies, etc. Our living room is now graced with a chair lift recliner, a bedside potty, a bed tray and a hospital bed. Oh, and the stair glide guy drove back up from Hagerstown to install a threshold ramp to make it easier to use the wheelchair.

Let's see, a CNA came today to give dh a bed bath. She considered using the swivel, slide out shower tub chair but decided, since it doesn't really have adequate hand holds or safety bars, to do the bed bath instead.

Perhaps it was because she is quite young (23), and very pretty, dh actually decided to shave for the first time in eleven days. I asked him hours before she arrived if he'd like to, but he told me no.

A pretty face did the trick and now he has one, too.

Almost forgot... dh's friend, Joe, brought out a television stand so we can bring down his 42" set for the living room. WHERE he thinks we're going to put it is another story!

The other day, he was feeling so awful he told me he was ready to go to paradise. Naturally I said, "You're just in a hurry to get your 72 virgins."

To which he replied, "With my luck, they'll all be old crones."

If nothing else, he still has a sense of humor.

One semi-political statement--we can't say enough good things about the VA. You know, that horrendous government run health care system. They have been absolutely wonderful during this journey and so have their suppliers. Danny, the stair glide guy is just one small example. Another is our social worker. She went out of her way to call the fee basis administrator to straighten out the hospital bill from back in May. He had deemed it not covered but she set him on the right path and he has reconsidered his decision--it's now covered. Maybe we should send her to DC to talk to Congress.

Today was almost too much to bear.

Youngest dd and I made plans yesterday for her to sit with her dad while I went for groceries. Her husband mowed the grass yesterday and planned on doing the trim work today. They planned on being here around 10:30.

Then, the hospice nurse called and said she and the social worker wanted to come out at 10:30. After explaining my plans, she switched the visit to 1:30. So, I should have had from 10:30 to !:15 or so to run my errands. Sigh...didn't happen. Evidently when we drove home from Martinsburg on Tuesday, I forgot to turn off the headlights and my battery was dead. As it turns out, DD's hubby wanted to bring over his small pump to clean out Abby's (our dog) swimming pool and refill it with fresh water so he was coming over separately. Daughter was here a good half hour before her hubby came up the driveway (and she was fifteen minutes late), so I lost a good 45 minutes of my errand time...

But! I had no clue what time it was because the clock on the dash stopped when the battery died.

And, instead of going to Save-a-Lot for milk and bread, I just got everything at Martin's and paid twice the price for both items. Two stinking bags of groceries were over $90! Nope, no steak, lobster, caviar, shrimp, crab, exotic cheese or even a jar of peanut butter. Just normal stuff plus a bottle of prune juice.

I no sooner arrived home and carted in the groceries than I saw my niece and her daughter walking down the sidewalk. Behind them was my middle sister.

Two minutes later the nurse arrived. She was only there for half an hour before the social worker arrived. Nurse left and social worker did her thing but before she was finished, the guy from Comfort Keepers showed up. Oh, and before the social worker arrived, dd went back into town for me because I forgot to get the bologna my husband wanted... (I see a trend here with my memory).

Dh and I live quiet lives. This inundation of people is quite wearying for both of us. At least next week we will be on a regular schedule--I hope.

Peace and quiet--priceless.

Rainsong
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Old 07-19-2013, 08:03 PM   #103
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keeping you and your dear husband and entire family in my thoughts.
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Old 07-19-2013, 08:22 PM   #104
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Rainsong I have kept up with this thread but remained silent. Sometimes it's hard to know what to say. I too like my peace and quiet so I can understand that part of what you are going through. I am praying for peace and comfort for you both.
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Old 07-20-2013, 09:22 AM   #105
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I'm so glad that you are surrounded by such kindness and VA competence!! You are both in my thoughts. < Hugs >
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Old 07-20-2013, 09:57 AM   #106
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I just found this thread. I have seen many of your posts elsewhere but never saw this thread. I am so very sorry for all that you and your husband are going through. Please know that you are in my thoughts and prayers. Cancer is a horrible, horrible disease.
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Old 07-26-2013, 08:40 AM   #107
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More hugs and good thoughts your way.
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Old 07-30-2013, 08:10 PM   #108
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My thoughts are with you both.

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Old 07-31-2013, 07:26 PM   #109
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Thanks everyone for all your warm wishes and thoughts. I'll try to update as time and circumstance allows.

One small update: the nurse requested a stronger pain medication for dh and it was delivered this afternoon. It doesn't work any faster (hubby seems to think it should work the instant it hits his tongue) but it does last longer, which means he's in a better mood most of the day.

Still, there are subtle changes I notice daily. Lack of concentration, memory slipping more, more confusion, hearing getting worse, becoming a bit more child-like. By child-like, I mean I have to tell him to stay in his wheelchair until I get the brakes set. He's raring' to go the instant I stop rolling and that could lead to catastrophe if I'm not on his left side holding him steady. Before hospice, I had to call the rescue squad to come pick him up off the floor when he tried to walk on his own.

What has me worried at the moment is the MRI report and the mention of the cancer invading the ventricular system. If the cancer continues, it could spread to his spinal cord and that's a whole new story. I've promised my youngest dd that I wouldn't put her dad in a nursing home. She's a CNA and has worked in two of them in the area and says the people don't care about the patients and treat them horribly. So, if it does invade his spinal cord, I don't know what I'll do.

Gotta stop worrying about what might not happen, right?

Rainsong
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Old 07-31-2013, 07:59 PM   #110
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Rainsong, I don't know what to say. I'm so sad to read this. < hugs >
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Old 08-02-2013, 01:55 PM   #111
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Hugs Rainsong. I came as soon as I saw your e-mail. I haven't been here often due to our own problems. But my heart aches for all of you. I wish I could say something or do something to help. I know the wonders of quiet and peace when no one is around to take up your valuable time with someone you love.

Take care of yourself and know that you are in my thoughts. I am so very sorry and want you to know that you have given Butch wonderful years and your care for him now will help you in time to come.

Love you my friend.
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Old 08-18-2013, 03:37 PM   #112
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Thinking of you and Butch today, Rainsong. So sorry for both of you having to go through this.

Sammie and Mark, too. Love to all of you and your families, too.

Life sucks sometimes.
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Old 09-12-2013, 08:09 PM   #113
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Since last Sunday evening (9/0, Butch has had one small bowl of vegetable soup, one half of a biscuit, and then last evening, one scrambled egg and about half a slice of toast. He's still drinking orange juice, water and ice tea, but just is not hungry, although today he said he wanted a couple hot dogs and by the time it was ready, he was no longer hungry. (I don't nuke hot dogs)

So, the hospice nurse seems to think he may be starting the last stages given that he's not very communicative, sleeping a lot more than normal (slept most of Monday, Tuesday and Wednesday) and his body functions have slowed way down. From what I've read about end stage brain cancer, I have to agree with her.

One of the other signs is saying things that make no sense. Over the weekend he told me, "I hope she mails my lips back."

He was also talking to Charlie. Well, Charlie is our brother-in-law and he lives in southern Virginia--and wasn't visiting at the time.

Butch also asked me why there were goblins in the house.

Yet there are other times he's perfectly lucid, usually when he's telling me he loves me.

And he still takes my hand and kisses it like in the days before he became ill.

This is so hard.

One of my sisters (my nutty sister) asked me if I was prepared for after his death. Even though we have arrangements made, hail no I'm not prepared--and that's exactly what I told her. We've had 18 months to accept the outcome but I don't think I'll ever be ready.

Wish i had better news for all of you who have been so supportive. I truly appreciated all your messages even though I don't often answer you.

Thank you all so much.

Rainsong
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Old 09-13-2013, 01:12 AM   #114
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(((((HUGS)))))
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Old 09-13-2013, 06:54 AM   #115
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(((Hugs)))
I can't imagine.
Know that you are in my thoughts.
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Old 09-13-2013, 12:50 PM   #116
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Thinking of you ((((Hugs))))
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Old 09-13-2013, 01:11 PM   #117
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I am so, so sorry to read this. I wish there was some way we could help but know that you are both in our thoughts and we're sending our love from Tucson. So very sad.
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Old 09-13-2013, 01:13 PM   #118
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Rainsong, just reading this for the first time. I am so sorry for what you and DH are going through. It must at times be a nightmare, at othertimes knowing your strength and resolve, a manageable bump in the road.

I am going to be thinking of you and watching for updates. I think this forum is great for your day to day experiences...vent vent vent...I don't think there is anyone who has been on SCS for very long that does not love you! And we all admire your intelligence and clear opinions!
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Old 09-13-2013, 01:43 PM   #119
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This is crummy, why does life have to be so hard? I pray your husband is comfortable, not in pain, first of all. I also pray they are giving you the support you need right now, without being intrusive. Be alone if you need to.
It is expected he will be in and out. Sounds like you two are having very lovely times when things feel like they always did.

I ache for you... from the bottom of my heart. I also know, you can do this for him. You can let this be his own experience. You can be at his side as needed or as your physical strength allows. You will do what you can control, that is all one can do.

Hugs. You have a huge number of friends that love you dearly.
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Old 09-13-2013, 05:40 PM   #120
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(((HUGS))) Rainsong. Hugs and love to both of you, and to your daughters as well.

You and Butch are in my heart and my prayers.
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