Cancer Cachexia

PieSusan

Tortes Are Us
Super Site Supporter
Arnetta, I had the same problem with my mom and baths. Once, I had to call 911 because she couldn't lift herself and I couldn't lift her either. So instead, we used my dad's bath chair in the shower and a long shower hose and created a spa experience for her. She loved it. It worked out well.
Best, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Monday, July 27, 2009 8:22 PM, EDT
Warren & Arnetta Journal


What a wonderful day this was! It was a huge treat to have a visit from our daughter, Caryn, and our four granddaughters for a few hours today. Grandpa was delighted to be able to play UNO with the three oldest girls, Becky (almost 12), Rachel (10), and Grace (8), while the youngest, Beth (almost 5), busied herself with toys from the granddaughters’ bunkhouse room. Beth is a little young for most games the older girls enjoy but she is one of those kids who can entertain herself with just about anything so she had a great time, too.

The older girls had to teach grandpa how to play UNO again and help him along the way, too, but he was able to muster enough stamina to play two games with them. Then it was naptime for Grandpa and lunchtime for us. Caryn fixed the pizza pocket treats she had brought for the girls and Caryn and I had a bunless grilled black bean burger with melted lowfat cheddar cheese, a few kettle chips and some vegies.

After lunch, Caryn stayed with her Dad for 20 minutes while I drove to the post office with the State of Michigan Unemployment Insurance Agency quarterly returns for our two corporations and our son’s. The forms needed to be postmarked today so I’m glad I remembered to do them last night and mail them out today.

While Caryn and the girls were here, Helga and Hank, two of our oldest friends (the friendship – not the friends) came by for a visit. They brought Warren a very large book of Sudoku puzzles that he has been asking me to get for him. Warren is delighted to have the book and I’m delighted not to have to go shopping for it, so many thanks go to our friends for the thoughtful gift!

We both had a wonderful visit with Helga and Hank – it has been far too long! It was wonderful that Caryn and the girls got to see them, too, and vice versa. Our kids and Helga and Hank’s kids practically grew up together. Annual family camping trips – sometimes more than one a year - were a huge part of our lives and still comprise some of our fondest memories of when the kids were young.

For so long, Warren wasn’t up to visitors and he asked me to try to limit access to him. The pain and fatigue from chemo was just too much for him and he didn’t feel like he was very good company. It is so wonderful to have Warren free of pain and the stupefying effects of pain medications. During yesterday's visit from Justin and Kate and the time with family and friends today, we have witnessed some of that fun time with family and friends that Warren originally promised us along this treacherous road we travel. The fun will need to be in small doses because Warren is really tired tonight after such a big day, but he is also thrilled and elated by his enjoyment of the recent events.

As for confusion, I heard Warren babbling over the monitor when I woke occasionally during the night last night, but I had the volume turned down enough that I was able to return to sleep fairly quickly. I did get a bit over seven hours of sleep and woke refreshed.

Warren was awake this morning when I woke up and was a bit confused about a few things including timing and the digital clock that continues to confound him throughout the night. Helga and Hank looked at the clock and, seeing that it is just a simple digital clock radio, came to the conclusion as I have, that Warren is unable to read the clock because of a decoding problem in the brain when he is groggy at night. It is the same clock that we have used in our bedroom on Warren's bedside table for the past few years and we have never had a problem with it. Nonetheless, Hank plans to check the Internet for a large faced lighted digital clock he saw that may be easier for Warren to decipher.

Warren had had diarrhea sometime during the night and his commode, pants and bedding needed to be cleaned and changed. Thankfully, though, his bowels have been fine the rest of the day so we hope it's the end of that problem. At any rate, I believe the constipation problem is licked and we need to cut back on our stool softening measures - at least for now. For today I cut out the prune juice and cut the Senna dosage in half. Tomorrow our Hospice nurse, Mary, is coming so I will ask her what she recommends. I want to keep Warren’s plumbing in good order now!


After I got Warren cleaned up he had his Ensure in bed, then drifted off to sleep in that place to which he goes where he talks (albeit incoherently) more than he ever has in his life. At about 10:30, he woke up pretty coherent and got better from then on. That has been a fairly consistent pattern for the past three days. So far, we are handling it well.

All in all it has been a very good day. God was so good to send it to us and I pray for many more like it!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Tuesday, July 28, 2009 7:08 PM, EDT
Arnetta & Warren Journal


For Warren and me today is another good day patterned after the last few. Warren is pain free enough that there is still no need for any pain meds. Now that he feels better his sense of humor and desire to see people is making a comeback. If this is what the cancer moving to the brain means (as several people have suggested) then God has answered our prayers for relief from pain by making sure that the cancer spread to the right place. And if Warren can't be cured, at least we can have some quality family and friend experiences in the time he has left.

Yesterday was an absolutely wonderful day and Warren and I pray there will be many more like it. To that end, I hope to make a concerted effort to plan things that will bring Warren and our family joy during his lucid times. Warren's 65th birthday is September 1st and if he is still with us and free from pain, it would be wonderful to have the whole family here for a joyful celebration of his life. No one would be more deserving.

In a strange twist of fate, therefore, I am actually comforted by the idea that the cancer may be in Warren's brain if that will save him from having to endure tremendous pain in his final days. My prayer today is that Warren's apparent dementia stays manageable and that the memories he returns to are ones that bring him peace and happiness in the end.

So everyone, is this respite from pain our miracle? As a Methodist preacher once explained to me, God doesn’t “make” or even “let” bad things happen to good people. When God created the universe, He set the laws of physics and nature in motion. Then he created the creatures that inhabit the universe to learn from and deal with those laws. He never promised us that we would be immune from harm at the hands of natural laws. He did, however, promise that He would always be there to guide and comfort us as we make our way through our lives on Earth.

God has been with Warren and with Me in countless ways on our “walk through the valley of the shadow of death”. It is not for us to know why He seems to have decreed that Warren will not be destined to stay here for very much longer but we do know that God has a plan. Our faith is strong.

I had an experience almost 39 years ago now that changed my life forever and also had a profound influence on my faith. I feel comfortable now relaying that experience to all of you. Some of you have heard my story or read it as a Devotion in our Annual Church Lenten Devotional Booklet a few years ago. I reprint it hear for whatever comfort or joy it may bring to some of you as I’ve been told that it has to several others…………….


The Shadow of Death
Psalms 23: vs. 4-5: Yea, though I walk through the valley of the shadow of death, I will fear no evil; for Thou art with me; Thy rod and Thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies; Thou anointest my head with oil; my cup runneth over.

When I was a young child, the idea of death conjured up terrible visions in my mind – my body lying in the ground, run through with the tunnels of worms and maggots. What a scary and terrible vision it was. It often haunted me and I feared with terrible dread the day that I faced that end.
When I discovered Psalms 23 as an adolescent it was an eye opener for me. A feast with the Lord in the presence of (and presumed reconciliation with) my enemies and my head anointed with oil was a much more pleasing picture to contemplate. Still the mystery of death itself – how it would come and how it would feel – was a constant source of wonder and curiosity, and yes, still dread to me.
Then came the day when I had the chance to find out for myself. I was twenty-three years old. Severe hemorrhaging a week after the birth of our daughter, Caryn, caused me to lose my life for a brief time when I didn’t come out of the anesthetic following emergency surgery. Words cannot explain the wonder and beauty of those few moments in the hereafter. Shortly after the incident, I wrote the following piece to recount the experience. May it bring you comfort as it has to me:

Life Across the Meadow
I fear not death for I have been there.

I once stood above and beside my lifeless body, watching silently as frantic nurses searched desperately for a pulse of life.

Then I turned away, for across a waving golden meadow a radiant white light beckoned to me.

I ran freely thereto under the azure blue sky, my soft white gown flowing in the gentle wind. Such exhilarating freedom I had never felt before.

Against the light, I could see silhouetted the robed figures who awaited my coming. I saw that Jesus and my beloved grandfather were there.

But wait! My anxious steps slowed. What, Who, was I leaving behind? What task was I leaving undone? Who would take care of our baby?

I turned to view the earthly body from which I had been liberated. There he was – ashen white with worry, the father of my eight-day-old daughter. He stood beside my lifeless body as doctors shook it and shouted at me to “wake up, wake up”.

Yes, they needed me. I could not leave yet. At the moment of decision, I reentered the lifeless form and it opened its eyes. Again it became me, as I looked up at him whose love had called me back.

I felt such profound peace. All my life I had feared death; but I never shall again for death is the door to life across the meadow.


By Arnetta Whitehouse
AsWritten in December, 1970 after the birth of Caryn Elaine Whitehouse on 11-28-1970
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Wednesday, July 29, 2009 6:27
Warren & Arnetta Journal


Warren has been very sleepy today. I’ve done the past two feedings with him drifting in and out of sleep. At one time this morning he said hello to his “Mom” - maybe he was just dreaming about a past experience. When he sleeps he vocalizes quite a bit but it’s not possible to make most of it out.

Dale and Celeste came over today to help formulate a plan for dealing with all the excesses here and we think we have been successful in that endeavor. A couple of you have written to me that you are interested in getting all your old files but, unfortunately, I didn’t start a list until now and I don’t trust my memory. Please notify me again and I will be sure to add your name to the running list I am now keeping. I remember that Pete did want everything.

After the three of us talked and planned, Dale left and Celeste and I did today’s project – washing the blinds in Warren’s downstairs room. Before I put Warren to bed tonight I will clean the windows and put the clean valances back up, too.

I hope Warren will be able to sleep tonight. He told the visiting nurse, Mary, today that he only slept about three or four hours last night and was awake the rest of the time. Mary will be ordering him something for sleep that should arrive tomorrow.

Yesterday I wrote my philosophy of God’s universal plan as inspired by Reverend Kathleen Groff, Associate Pastor at Nardin Park United Methodist Church (1998):

“God doesn’t “make” or even “let” bad things happen to good people. When God created the universe, He set the laws of physics and nature in motion. Then he created the creatures that inhabit the universe to learn from and deal with those laws. He never promised us that we would be immune from harm at the hands of natural laws. He did, however, promise that He would always be there to guide and comfort us as we make our way through our lives on Earth.”

This morning my good friend, Helga, said so well what I believe and inferred in my journal entry but didn't delineate. I've asked Helga to allow me to quote her here:

“I think that's absolutely true. The set-up of the universe was designed to let it run its course. However, I do believe God can change anything he wants at any time; you just can't expect it. That's called a miracle and they happen every day. Unfortunately, they don't happen every time we wish it to be so. Miracles aren't all done with crash of thunder and lightning bolts and visions of angels. The right person calling at the right time, a rainbow to tell you it'll be all right, a passage you "happen" to be reading at a time that it fits perfectly into your life.... all these are ways God works his wonders.

If the cancer is, indeed, in the brain, then God has granted Warren the freedom from the awful pain and that, in itself, could be deemed His miracle.”

Today as I was folding the sheets from Warren’s hospital bed, I realized that another one of those mini miracles had occurred in our lives.

I thought back to the time almost 30 years ago when Warren and I got our king-sized waterbed. Money was very tight so I went hunting for king-sized sheets at garage sales. New ones were very expensive back then. In my search, I found some wonderful “Vera” sheets in excellent condition for a very attractive price, so I bought all three sets available. I don’t know if “Vera” sheets even exist any more but back then they were very high-end designer sheets of ultra fine percale boasting a very high thread count.

(Aside: I was new to the upscale nature of Farmington Hills and I had to laugh at my good fortune. It was unbelievable to me that this woman had replaced perfectly good, very expensive sheets because she had redecorated the bedroom and the sheets didn’t match anymore. Back then I would have (and still would now), covered up the sheets with a bedspread that did match or just redecorated the room so the sheets would still work.)

Warren always loved those sheets and every time he got into bed with fresh “Vera” sheets on it he would “ooh” and “ahhh” with pleasure. However, through the years all the seams have come out and eventually the fitted sheets just wouldn’t stay on our extra thick king-size water bed unless and until I could find the time to do some work on them. But alas, I never seemed to be able to find any time to spare for such a menial task. Meanwhile, three or four years ago I found a good sale on some sheets that came close to the comfort of the beloved “Vera” sets and we began to use those. Warren agreed that they were pretty good, too.

I can’t tell you how many times I almost gave those “Vera” sheets away to a rummage sale to make room in the linen closet, but every time something (or someone?) told me to hang on to them.

When Warren’s twin-sized hospital bed came the other day in extra long with a thick air mattress on it, I first tried full-sized sheets as the Home Care man advised me to, but the full sized weren’t large enough to go from end to end or to tuck in. I couldn’t find any extra queen-sized sheets to try (Dad’s bed size) so I went scrounging in my linen closet for something that would work.

I thought, “Why not!? I’ll try those king-sized “Vera” sheets. I won’t need the elastic corners of the fitted sheets, the sheets will be long enough, and I’ll have plenty to tuck in on the sides to hold them in place.” Walla! They work perfectly. (Another aside: And they even kind of “go with” the room!)

Warren now has the pleasure of his favorite clean, fresh sheets on his bed thanks to the fact that I listened to that little whisper that told me to “hang on to those”. God’s angel? I like to think so. It’s nice to hear the “ooh” and “ahhh” again – a not so mini miracle in itself!

There will be more good days and more small miracles to treasure in the days ahead. Be watching for them in your own lives, too. I certainly will in ours!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
I saw God today-Song by -George Strait.
Fits just perfect after Arnetta's last Journal.

[ame]http://www.youtube.com/watch?v=1UHz5byGMTs[/ame]
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, this is a mouthful:
Yesterday I wrote my philosophy of God’s universal plan as inspired by Reverend Kathleen Groff, Associate Pastor at Nardin Park United Methodist Church (1998):

“God doesn’t “make” or even “let” bad things happen to good people. When God created the universe, He set the laws of physics and nature in motion. Then he created the creatures that inhabit the universe to learn from and deal with those laws. He never promised us that we would be immune from harm at the hands of natural laws. He did, however, promise that He would always be there to guide and comfort us as we make our way through our lives on Earth.”


This is a very nice thought. I have to try to digest it.
 

Wasabi

New member
There will be more good days and more small miracles to treasure in the days ahead. Be watching for them in your own lives, too. I certainly will in ours!

amen.jpg
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, if you can view death as a celebration and passage to the other side--more power to you. It is a nice thought that after we shake our mortal coil, our souls wind up with G-d. Take comfort in whatever and wherever you can find it. Peace be with you and enjoy these days. They are very precious. Now is the time to ask all the questions you need to have answered.
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Thursday, July 30, 2009 8:34 PM, EDT
Warren & Arnetta Journal


Warren slept pretty much around the clock for the second day in a row now. Yesterday, he said it was because he hadn’t been able to sleep at night for a couple nights, but last night he had an Ambien (Plus) and did sleep through the night. I had a hard time waking him up to give him his feeding in bed this morning so I just ran the drip while he slept – it worked fine.

Warren did wake up long enough to get a shower at noon today with the help of our new Hospice Aid, Jennifer. She put Cetaphil Lotion all over him and he said it felt really good. He always used to hate lotion because he felt it clogged up his pores but that was when his skin was oily. Now it is VERY dry.

After we got him back downstairs and in the sunroom, he fell asleep again and slept through his second feeding at 2:30.


Around 3pm, I called the Hospice Nurse Hot line to ask if I had done something awful by giving in to Warren’s insistence that I give him a mild over-the-counter sleep aid along with the Ambien. It is true that Ambien hasn’t worked well for him in the past so I had let him have his way. He wanted two Ambien and I talked him down from that since the dose is one-half to one.

The nurse said I certainly hadn’t hurt Warren but the over-the-counter sleep aids (such as the sleep aid component of Tylenol PM that I gave him) do tend to cause a “hangover” the next day. Warren agrees that he will have just the one Ambien tonight. By tomorrow night he should have the new sleep aid our Nurse Mary ordered for him (Restinol) and maybe that will work better for him than the Ambien has.


The Hot Line Hospice Nurse, also named Mary, told me that Warren might just be at that place in his disease where his need for sleep will continually increase from now on and his overall quality of life will decline.

I know Warren's mental acuity is declining quickly judging by how much he struggles with even easy Sudoku puzzles. He notices the decline himself and resolves to get better at the puzzles. At first he was sure that he had run across some defective puzzles but I think he realizes that there can’t be that many.

Warren’s confusion is still present, though it's not as pronounced as it was a few days ago. Most incidents of confusion are more subtle, like forgetting established procedures and not remembering particular facts about the house. There is still an occasional invisible cup or spoon, too.

Warren’s speech is increasingly slurred and less intelligible and it’s getting more difficult to understand him. Whether the slurred speech is due to his lethargy or the possible cancer activity in the brain, I don’t know. Maybe time will tell. He still makes continual noises when he sleeps but they aren’t syllables or babble – more like hums, sighs, groans and grunts.


The current Hospice working hypothesis is that the cancer is in Warren’s brain. The Hot Line nurse indicated to me today that it’s normal for cancer to spread to the brain in succession after the liver. We have decided it is best not to tell Warren – at least for the time being, so if you should happen to visit him or otherwise speak with him, please don’t mention it. We can’t imagine what could be gained by suggesting the possibility to him if he hasn’t already considered it for himself.


At 4:00 this afternoon, Warren finally woke up long enough to turn on TV and find the Buick Open to watch Tiger play golf – oh, and those other guys, too – then he promptly fell asleep again.

I woke him up again to test him for his 6:30 feeding and he has been awake since then working on his Sudoku puzzles. Brother Bob brought him some samples of a few other puzzles to try, too. He says he will. It may be good for Warren to try to expand his horizons.


I hope Warren gets good rest tonight and wakes up feeling more chipper tomorrow – especially by 1pm. Our minister, Dr. Dale Miller, is coming to visit and give us communion before he leaves town for a while. I’d like Warren to be alert for that. …And more!!!

In closing, I received the following poem from cousin Linda Borden Lee today. I leave you with this final thought………


Thought for the Day:


If God had a refrigerator, your picture would be on it.

If He had a wallet, your photo would be in it.
He sends you flowers every spring.

He sends you a sunrise every morning.

Face it, friend - He is crazy about you!


God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Friday, July 31, 2009 7:06 PM, EDT
Arnetta and Warren Journal


It’s after 6pm as I sit down to begin this journal and Warren has been awake on the sunroom couch doing his Sudoku puzzle for the past couple minutes. I've tested him but he isn't ready to feed yet.

Warren also woke up when Reverend Dale arrived to visit and give us communion. Other than those two times and a couple trips to the lavatory, he has slept the entire day. The whole time he sleeps, he makes eerie sounds.


Our Hospice Nurse, Mary, called to tell me that Warren’s Restoril should arrive today, which it has. Mary also asked me how Warren is doing today, so I told her again about his many hours of sleep, both day and night with no pain medication to blame for his drowsiness. The possible inference of Mary’s reply, only really hit me a few minutes after I got off the phone with her. She said, “I’m so glad, then, that he had such a wonderful week with family and friends in the last few days.” It sounds like maybe Mary thinks the end is near. I often wonder, too, as I watch and listen.

And now I find myself in a quandary of thought since Reverend Dale Miller’s visit today. The three of us enjoyed a wonderful chat in which Dale asked Warren all kinds of questions about his life and his interests. Afterwards, Dale gifted us with a wonderful mini sermon, followed by communion and meaningful prayers. Finally, when Reverend Dale skillfully maneuvered the conversation to whether there was anything else we needed to talk about, I knew where he was headed but Warren appeared to be oblivious to it.

I responded that Warren and I do need to talk to him about plans for our funerals because we want to be cremated and our ashes spread in the courtyard Memorial Garden at Nardin Park, our church home. Warren confirmed that my statement was correct, then he said something to the effect that he knows we need to discuss plans in detail sometime, but he keeps thinking he will find some way to turn this disease around.

I was surprised to say the least. Warren has never wanted to hear about any of the ideas I have brought up to cure the cancer, but he has never shown any interest in “finding” anything for himself either. He always has a million reasons NOT to do the RIFE even though he has said all along that he believed it could help. Could it really be that Warren is blind to the fact that his cancer has had time to grow unhindered by anything but wishful thinking since the last chemo treatment on July 7th? I know prayers are powerful but “God helps those who help themselves, too”. Didn’t hearing that the cancer had spread to the liver strike fear and urgency into Warren’s heart if he really wants to stop its unfettered run. Am I doing the right thing by not telling him that there is evidence that the cancer has spread to his brain?

If Warren can stay awake long enough this evening, he and I really need to talk. I just finished his final tube feeding for the day (while he slept again) and, at least for the moment, he is glued to the Buick Open. However, the sun will set on Grand Blanc soon.

I am praying that God will give me the right words! Ooh oh, as I post this, I hear the eerie sounds of deep sleep again. God Help Me to do the right thing!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Saturday, August 1, 2009 8:44 AM, EDT
Warren & Arnetta Journal


It’s 8:30am. Warren isn’t up yet, but I just fed him “breakfast” through his tube as he slept so we can stay on schedule. I’m posting this journal entry this morning as a follow-up to the one I posted last night. There will be another entry this evening to let everyone know about Warren’s day.

Many thanks go to those of you who have sent me encouraging words. You are right – it is so hard to know what to do! I am not pushing Warren in any way, but if he really does want to explore “cures” I want to have all the information I need for him to do so and be available to help him carry out his wishes. The decision to go forward or not and to what extent will be entirely his.

Warren and I talked last night and it seemed to go well. I simply reminded him that we might be running out of time, which he said he knows. The rest is up to him. I will not “nag” him.

Warren wanted to know what I had found in all my reading. I told him there are thousands of “cures” out there, but the ones that seemed most conventional and safest to me had to do with diet (non acidic, i.e. no animal products) and, of course, the Hydrazine Sulfate which we have been doing for quite some time. The HZ has kept Warren from wasting away like most cancer patients do. Those two things – diet and HZ – have worked to cure some people.

I mentioned again to Warren, the article about the Lansing man sent to us by our client and friend, Eric, and THIS time Warren asked to read it instead of saying “not now”. He seemed interested in the similarities to his own diagnoses and he also agreed with the vegetarian diet aspect of the treatment. However, Warren, like the man in the article, was uncomfortable with the daily coffee enemas. (I don’t blame him!) I had also looked up information on coffee enemas and found out they are controversial and, in some cases, dangerous. The purpose of the coffee enemas is to eliminate the toxic wastes from the body and that’s what our Rife program does. Warren decided, as I had, that our approach should be a combination of diet and Rife. We are both comfortable with that.

I am going to put in a call to Caring Bridge reader, Bill’s, friend, John, in California, too. Like the man in Lansing, John also cured himself of cancer after rejecting chemo. Bill says he used methods similar to some I have mentioned and he has agreed to speak with me about them.

Last night I wrote the following e-mail to our Rife consultant and received an auto-response from her (also below). The auto response is very unusual – she usually answers within hours on her Blackberry. I hope she will be okay…………….


Dear Dr. New,
We are still here and I apologize for being absent for so long. Here are the facts:

1. Warren finished chemo on 7-7-09

2. Tests taken on 7-13-09 showed that the cancer had grown and also spread to the liver but Warren's skin tone is still decent and his eye whites are still white.

3. We went on Hospice on 7-14-09

4. Warren was in a great deal of pain and it was intensifying rapidly to 8 or 10 on a scale of 1 to 10. Hospice had him on morphine under the tongue. During a short stay in the hospital, he was also given Dilauidid twice followed by injections of morphine when the Dilauidid was discontinued because it caused hallucinations.

5. Warren has only felt up to doing the Rife sporadically at best - I think he has only done the cancer program and the foot bath two or three times since he last had chemo. He also didn't do it very faithfully during the weeks he was on chemo because of a fear that somehow it would interfere by removing the chemo toxins prematurely.

6. According to Hospice, there is now evidence that the cancer has spread to Warren's brain for the following reasons:
A. As of July 22 Warren's pain has suddenly diminished significantly (no more than 2 or 3 on a scale of 1 to 10) without narcotics. He had been on morphine but is no longer taking any pain meds since the pain left very early that morning. Many doctors and others have told me that lack of pain could be a sign that the cancer has spread to the brain.
B. Periods of confusion have frequently occurred.
C. Warren is asleep far more than he is awake and he babbles and makes continual noises in his sleep.
D. When Warren is awake, his speech is noticeably different - kind of slurred and at times difficult to understand.
E. Warren is having a great deal of difficulty walking especially with the neuropathy in the left foot.

I thought Warren must have resigned himself to this disease because he seldom mentioned the Rife or showed any interest when I brought it up, but he told our Minister today that he still hopes to beat this cancer. Since we thought it best not to mention the spread to the brain theory, Warren may not have been aware how urgent the situation is. Tonight I found out that his method of choice has been and is Rife, along with a vegetarian diet.

Now I have a lot of questions:
1. Is it too late for RIFE to help Warren if the cancer has gone to the brain?
2. Do you know how Hospice feels about Rife? I'm wondering if I can even mention it to them or will I get us or you into trouble if I do or if I don't? We do want to stay on Hospice.
3. Do the programs we have now need to be revised given the present circumstances? I remember you saying that you wrote the programs to not interfere with chemo.
4. Are you willing to still work with us considering all that has happened since we first visited you?

Hoping there is still a chance, 
Arnetta M. Whitehouse

Response:

Dr. New is having a health crisis. She will be fine. However, she may be unable to respond to emails over the weekend of Thurs July 30 through Sun Aug 2nd. Please be patient, as she'll get to your emails ASAP. Thanks for your understanding.
 

dansdiamond

Food Sound Eng.
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Saturday, August 1, 2009 4:50 PM, EDT
Warren & Arnetta Journal


I agree with those of you who say to let Warren go in peace, but I also feel that I couldn’t ignore his last wishes regarding a search for finding his hoped for cure. Personally and in truth, I think he is too far gone to be helped by anything now. Hospice agrees - they give him less than two weeks and today I'm trying to come to grips with that.

Hospice has warned me that I need to let the family know to come and see Warren possibly for the last time just in case the end is sooner rather than later. I’ve talked to the kids and with Warren’s brother, Bob, about it. As it happens, Daddy’s 95th birthday is tomorrow and it’s a Sunday so everyone is off work. We are going to get together for a birthday celebration for Daddy and they will all see Warren, too. It remains to be seen whether Warren will be awake enough to acknowledge the family’s presence but God will let him know that they are here – possibly to say their final Goodbyes.

What I want more than anything else for Warren is peace and freedom from pain. God has graciously granted the freedom from pain – I’m not sure about the peace, though, at least not yet. If Warren ever wakes up today and asks about doing the Rife, I plan to tell him that I haven't heard from the doctor yet and I hesitate to waste time and his limited energy on a program that may not be effective. Since Warren is more out of it and sleepier today than ever and it’s getting worse each day, I'm pretty sure that future Rife treatments will not happen because he won’t ask for them. I know that he isn’t up to them either so I think, if he does ask, I can dissuade him or just stall until he goes back to sleep.

If Warren doesn't acknowledge that he is dying and that he would like some say in his funeral plans, I think the kids and I and Bob can handle it together. It scares me a bit that Warren hasn't admitted to knowing that death seems imminent, but I really do believe that he is right with God so I'm trusting in our Father to take Warren home.

Just a few minutes ago, Warren called me in to turn off the Golf – the Buick Open! He said he didn’t want to have it on but he seemed to not know how to work the remote to turn it off. That is all so NOT Warren! He said that the golf is “too much pressure” and he desperately “need(s) a nap”. The fact is, however, that Warren never really woke up today except to transfer from one place to another and even then he seemed dazed and only moved by rote. In fact, he told me a while ago that he had no idea how he had gotten into the sunroom. Warren is also very confused today and his speech has gotten significantly more unintelligible.

I thank God above all that Warren has no pain. I pray, furthermore, that the blessing continues whether Warren lives just one more day or a couple weeks until Reverend Dale Miller, who visited yesterday, returns from vacation. Just in case Dale isn’t back in time, I contacted Reverend Bill Ritter, the first Methodist Minister who spoke to our hearts (and also the reason we joined the Methodist Church). Reverend Ritter said if Warren doesn’t survive until Dale returns, he would be on hand to take part in Warren’s service at Nardin Park with Associate Pastor Susan Youman’s permission.

This afternoon, I talked to Brian at Heeney Sundquist about preliminary plans for the funeral. There will be a viewing and a day between the viewing and the service to allow time for the cremation. The service will be at Nardin Park where Warren’s ashes are to be spread in the Memorial Garden; then he will be there with me whenever I volunteer to tend the garden in the years to come. I’m hoping that we can also arrange a luncheon at Nardin for our family and all our many, many friends who are able to attend.

In closing this journal entry I pray, "God please let Warren die at peace in Your Arms! And, hopefully, too, it will be while I am by his side just as I have been for more than 42 years."
 

Wasabi

New member
I have followed you both on your long journey. It is very personal to me you see. I have celebrated the good days and cried with you on the bad. I understand because my sweet man and I are walking that rocky and rough road. May God Bless you both and when the time comes for Warren to go, may God lift him gently in his arms and carry him home.
youareinmyprayers1.jpg
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, I was recently told by Rabbi Karp that 40 days prior to someone's death that they know they are dying. Some folks are willing to let go and some are not. Sometimes the kindest thing to do is to tell someone that it is ok to let go and that you will be fine. It is often the worry about those left behind that make someone's death less than pleasant. It is a difficult thing to do but it is a beautiful gift that you can give a loved one.
My prayers are still with you. Peace be with you, too.
Hugs, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Great Day @ Warren & Arnetta's.
Sunday, August 2, 2009 10:55 PM, EDT
We had a miraculous day today. God gave us perfect weather for our party. Warren slept all morning right through his first feeding, but he woke up and joined the party at about 3:00 when the last of the guests – the Lansing contingent - were arriving. Warren slept off and on during the afternoon but he stayed with us until everyone had gone home then it was his bedtime.

We had a wonderful birthday feast – five Little Caesar’s Deep Dish Square Pizzas –Hawaiian, Cheese and Mushrooms, Vegetarian Supreme, and two pepperoni and cheese. In addition, our next-door neighbor, Ann and her daughter, Vania, had delivered a beautiful salad and a huge platter of yellow rice with roasted pine nuts and golden raisins on Saturday afternoon. I ate some of the delicious yellow rice for my dinner last night, but I saved the plentiful remainder for the party today. The yellow rice and the salad completed the banquet in fine style and everyone loved everything! Pappa’s personalized birthday cake with ice cream was the final touch. We decided to use 9 1/2 candles for Pappa’s ninety five years – that was Kate’s clever suggestion.

Warren also enjoyed a piece of Hawaiian Pizza (ham and pineapple) and some birthday cake and ice cream with us and still had three tube feedings besides today!


Caryn and Tim had to leave by early evening for their long drive back to Lansing, but Jay and Kate stayed a little later to visit with us. Before Jay left, he gave his dad a very large hug and told Warren what was in his heart. The beauty of that moment will live in my mind and heart forever.

There is so much more I’d like to write, but the hour is late and I am tired. I just wanted to record another miracle in the book of our life before I turn in for the night. It was wonderful to see Warren enjoy some precious time with the family again! Warren and I have had some special moments in the past two days, too. Tomorrow I will have more time to write.

God is so good!
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, what are Warren's favorite foods? My dad requested rolls and butter, chocolate and Chinese food (House Special Fried Noodles from Hunan on Coventry) when he was in Hospice. I obliged each wish and he truly enjoyed eating real food in his last weeks. He had had his fill of hospital food.
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Monday, August 3, 2009 8:10 PM, EDT
Warren and Arnetta Journal


Today we met Sandra, the Hospice Nurse who is substituting for our regular nurse, Mary. Sandra was surprised at how strong Warren’s vital signs are given how extremely tired he looks and acts. His blood pressure was 118/58 when she took it and his pulse is good. Sandra mentioned several times, though, how hauntingly tired Warren looks. As Sandra noted, Warren’s eyes are red, droopy and watery making him look exactly like he says he feels after every small exertion – “I’m so tired, I just need to sleep now”.

Warren’s feedings are smaller now. Because of lingering residuals, Hospice recommended that I cut down from two cans to 1 1/2 cans at each of Warren’s three feedings. We are never able to squeeze in the Ensure anymore, but I encourage Warren to have at least a few bites of favorite foods when he feels up to it. Unfortunately, he rarely seems interested. He says he ended up associating eating real food with constipation pain after consuming food by mouth.

At this point, Warren is still handling and eliminating what Hospice considers adequate nourishment for his activity level and energy expenditure. Those are positive signs. For those reasons alone, Sandra is very hesitant to commit to any time frame regarding Warren’s passing. I think he does seem to be getting a little stronger, too.

I have noticed that over the past day or two, the babbling and strange sleep sounds have gradually lessened a great deal. There have been no hallucinations yesterday or today that I am aware of either.

It seems that when there is activity to stimulate him, Warren can stay awake for longer periods. He stayed awake the whole time Nurse Jennifer was here last Thursday to give him a shower. But then he was spent for the rest of that day, Thursday night and Friday morning. Warren was also awake and quite congenial when Reverend Dale came by to talk to us for about an hour on Friday. Afterwards he went back to sleep immediately, and slept all night Friday and all day Saturday. In fact, Warren never left his room on Saturday and slept through all his feedings. Then yesterday, as you know, he wanted to come and join Daddy’s 95th birthday party. He slept a lot in his place on the couch during the afternoon and evening, but he enjoyed the moments he was awake.

This evening the Booze Brothers – Warren’s bowling team – met in our sunroom for one last bowling party with their long time “brother”, Warren. I chilled some of the best beers in the house and for an hour and a quarter Frank, Jimmie, Tom, Bob and Mike recapped the teams’ bowling year and recounted some humorous anecdotes from the past. Warren didn’t join in much but I was watching him out of the corner of my eye. Every once in a while I saw a nostalgic look and a little grin. Warren felt sorry when he became so sick that he had to drop out of bowling just before his cancer diagnoses. The team was in contention for first place and Warren never got the chance to try to help them make it happen. He really misses bowling and the guys really miss him, too. I’m very glad they got this chance to be together again. Warren was back to sleep as the last Booze Brother left the room but when I woke him up to check his residual for feeding, he told me he had enjoyed the visit – it was very nice and not too long, he said.

Warren wasn’t quite ready to be fed yet after the guys left; maybe it was the Warsteiner Beer he and I split! Fortunately, within a half hour I could start the last feeding of the day so it shouldn’t be too close to bedtime for him.


By the way, Booze Brothers, we’ll need to do a retake – we didn’t get a picture!

With Warren still free of pain and able to enjoy company in small doses again, I have some hope that the words Warren said to me the other night might indeed come true. After telling me how very much he loves me and how “wonderful” I’ve been to him, Warren announced, “We will have some better days”. Maybe he is right. I really and truly don’t know what to think anymore, but it all boils down to what everybody knows – only God knows the time Warren will be called home.

There seems to be no doubt among Hospice people that Warren’s life is still winding down rapidly but recent events are causing at least Sandra, today’s nurse, to have some doubt about when the end will come. I pray that she is correct when she says it won’t be as soon as we thought prior to today.

Meanwhile I have a plethora of thoughts running through my mind:

  • Like the other Hospice nurses, Sandra also believes that Warren’s lack of pain can only be explained by brain involvement since he has had no pain meds of ANY kind since 2am on July 22 and there is still no sign of infection anywhere. Warren has always had a very good brain – maybe it can hold the cancer at bay a while longer and give us more time. That’s a good way for God to work a miracle.

  • I wonder if the Juice Plus capsules that I have been breaking open and putting in Warren’s formula for the past two days are having some effect on him. The capsules, recommended by Dr. New, were developed by a teacher/mom to make sure that kids get adequate amounts of fruits and vegetables. The bottles state, “Juice Plus Orchard Blend (and Juice Plus Garden Blend) provides naturally balanced whole food nutrition from a wide variety of nutritiously dense fruits (vegetables). It contains whole food concentrates including natural fruits (vegetables), juice (vegetable) powders, fruit (vegetable) fibers, food enzymes and acidophilus along with an array of phytonutrients and natural antioxidants found in the fruits (vegetables) themselves. The absorption and utilization of vital nutrients have been clinically demonstrated. ……This product contains nothing artificial, no added starch, preservatives, synthetic colorants or chemical stabilizers.”

    The capsules are my answer to Warren’s request to try a vegetarian approach to “finding a cure”. I give him the contents of two fruit capsules in the morning feeding, two vegetable capsules in the mid day feeding and one of each in the evening. I figure it can’t hurt and whatever can’t hurt could just help! Something seems to be helping! Warren seems to get a little brighter each day.
Praise God from whom all Blessings Flow!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Tuesday, August 4, 2009 6:38 PM, EDT
Arnetta & Warren Journal


Late last night, Warren’s normal voice returned unexpectedly at bedtime. For a while, he seemed alert and willing to talk. He mentioned being discouraged about feeling weak and not being able to do physical things anymore, especially with our granddaughters. He was hoping that he was able to give the girls enough other attention so that they would know how much he loves them. He also said he would like to have some better days ahead. I told him we already are having better days than the past few days have been and that I’m really enjoying having him back.

When Warren asked me what I meant by “having him back”, I told him a little about how out of it he has been for a few days and that I had really feared for his life. I also gave him a couple examples of the strange things he had said and done during those few days while assuring him that he seems to be over that now. He was very surprised and said, “I’m sorry, that had to have been scary for you”. He has no idea just how scary it was and I will never tell him everything! It would scare him too!

I asked Warren if he remembered how they had checked him for the spread of cancer into his brain when he had the “word salad” problem caused by pain meds; he said he did remember that. I told him I was worried that the cancer really had spread to his brain this time, but since he is better now maybe it was just the strong meds they had given him for pain.

That statement surprised Warren. He said he has no memory of being in pain, or of recently going to the hospital for a procedure that would stop the pain. He also doesn’t remember ever being on morphine or the Dilauidid that made him have hallucinations while in the hospital. I told him that someday he can read my journal and he will be amazed at all he has been through, just as his mother was when she read the notes I kept during her illness.

Warren has no idea just how much evidence there is to support the brain involvement theory – last night’s amnesia included – and, of course, I didn’t elaborate. I just said we’d leave all that in the past and go on from here. I do, however, really need to finish the Tuesday and Wednesday installments of our last hospital visit because some of the strange things that happened then make more sense in light of recent happenings.

Although Warren is still sleeping 85 to 90% of the time, when he is awake we have been sharing words of love and affection and talking more like we did when his cancer was first diagnosed. It seems Warren felt he had to go through at least a part of that dark place between diagnoses and his final days alone. I found I was unable to penetrate the wall surrounding him during that time. I’m told that is normal when a loved one is terminally ill.

There were weeks at a time earlier in Warren's illness when we didn't share feelings and things. He was in his own world and when I tried to knock, he didn't answer. I felt so isolated from him then, and in spite of family and friends being so wonderful to me, I still had a strong sense of being alone in my private life. Seeing Warren every day reminded me that I was supposed to be married to a lifetime partner, but he had become a silent partner. I talked a lot to God back then and my conversations with Him, as well as support from friends and family and keeping up with Caring Bridge served to keep me sane.

I know that Warren has been taking some quiet time to reflect on his life and set priorities in his mind. One of the Booze Brothers was concerned that talk about the missing “brother”, Keith, being at the marina with his boat, holes-in-one and 300 games may have been upsetting for Warren yesterday. All our friend could think was that Warren had not achieved two of those things and now he never will. We all know he really wanted to and was fully capable of getting the 300 game and the hole in one. The marina thing is also a love of Warren’s life which we know he misses. Our friend felt that bringing up those topics during the visit was possibly salt in the wound. However, as I told him, as important as sports have always been to Warren, I'm pretty sure he has come to terms with those things and put them in perspective. The things Warren is most concerned about and the themes that come up over and over again, are firstly, that his friends and family – especially his kids and beloved granddaughters – remember him fondly, and secondly, that he has done some good in the world, thereby leaving it a better place for his having been here. The other things would have been icing on the cake.

From what I’ve seen for myself and heard from all of you, I’m quite sure that Warren has accomplished those things in life that are most important to him. He can feel very good about that
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, the last journal entry is by far one of my favorites. It is these quiet conversations that you have been able to share that you will remember most fondly. Bless you!
 

Wasabi

New member
There were weeks at a time earlier in Warren's illness when we didn't share feelings and things. He was in his own world and when I tried to knock, he didn't answer. I felt so isolated from him then, and in spite of family and friends being so wonderful to me, I still had a strong sense of being alone in my private life. Seeing Warren every day reminded me that I was supposed to be married to a lifetime partner, but he had become a silent partner. I talked a lot to God back then and my conversations with Him, as well as support from friends and family and keeping up with Caring Bridge served to keep me sane.

It is this paragraph that taught me I'm not alone in feeling like this. DH and I are in this stage now and I feel so lonely.
 

arnettamae

New member
Dear Sister in my journey, Wasabi (Linda?), I felt tears come to my eyes when I read your comment about the isolation you are feeling now. I remember so well how hard those days were for me. Perhaps in knowing that you aren't alone, you will feel less alone. When I was experiencing the loneliness, I reached out to friends that had had very ill or dying spouses and they assured me that this marital disconnection is not an uncommon response among the terminally ill and it is in all likelihood temporary. Please feel free to e-mail me anytime at arnettamae@twmi.rr.com with any questions you have that I may not touch upon in my journal. I publish my private journal just to keep people updated on our beloved Warren AND to help others deal with a loved ones terminal illness. If I can help others learn from what I am going through I want to do that; if any good can come out of this heartbreaking journey Warren and I are on, it will help to ease the pain just a little bit.

I send my love and support to you. Arnetta Mae
 

PieSusan

Tortes Are Us
Super Site Supporter
I, too, have taken care of 4 parents, my grandma, my best friend, my father (who have all passed) and now my mom who is still with us but is failing. It is not an easy path being a caregiver but it is richly rewarding. The hardest part is learning how to take care of oneself.
Hugs to you, Linda and Arnettamae

Edited to add: One of my biggest life lessons is this: It is not what happens to one in life that matters but how one deals and copes with it.
 

Wasabi

New member
Dear Sister in my journey, Wasabi (Linda?), I felt tears come to my eyes when I read your comment about the isolation you are feeling now. I remember so well how hard those days were for me. Perhaps in knowing that you aren't alone, you will feel less alone. When I was experiencing the loneliness, I reached out to friends that had had very ill or dying spouses and they assured me that this marital disconnection is not an uncommon response among the terminally ill and it is in all likelihood temporary. Please feel free to e-mail me anytime at arnettamae@twmi.rr.com with any questions you have that I may not touch upon in my journal. I publish my private journal just to keep people updated on our beloved Warren AND to help others deal with a loved ones terminal illness. If I can help others learn from what I am going through I want to do that; if any good can come out of this heartbreaking journey Warren and I are on, it will help to ease the pain just a little bit.

I send my love and support to you. Arnetta Mae

Arnetta we are Sisters. Your journal has brought me into your life and into your home. I wish to tell you that you have helped me immensely along my journey. I am learning so much from you about caring, patience, love and understanding my sweet Bo. As of today, Bo and I are as one again, but it changes day to day. Like Warren, Bo was a strapping big man, 5'6, 220 lbs. I barely hit 5'. He is just a shadow of his self now. Like Warren, his passion is bowling. He misses it terribly. I do believe in prayers and I do believe in miracles. I pray for miracles for our warriors. I suffer with you. I cry with you, and I pray with you. Please place a kiss on Warren's cheek for me and tell him someone across the sea sends her love and prayers.

With Warm Aloha from one sister to another, Linda

P.S. I feel your hug, PieSusan. Thank you.
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Wednesday, August 5, 2009 7:04 PM, EDT
Warren & Arnetta Journal


Warren slept well until 6am this morning – that’s when I heard some commotion and a thud over my monitor. I ran downstairs to find Warren on the floor at the foot of his bed. He had gotten cold and got up to close the windows. I helped him get to the commode and then back to bed. In between helping Warren navigate from the commode to the bed, I closed the other window and turned off the overhead fan and the table fan. The whole house attic fan (on a timer) had already gone off on its own.

It was very hot when we went to bed and Warren was so miserably warm that he wanted to use all the cooling methods available to us. He was comfortable then and went to sleep easily after I gave him a sponge bath. But this strange weather we are having makes it very hard to plan for a whole night. When Warren’s commotion woke me up I realized that the temperature had dropped significantly during the night. Of course, since cold air sinks, the temperature drop is much more noticeable on the first floor where Warren sleeps than in the upstairs rooms which were just a touch too cool.

I asked Warren to please call me next time and not try to handle the problem by himself. He said he did call me, but I didn’t come. I think his voice must be too weak to project because I certainly woke up when I heard him trying to get around the room. Tonight I will put the monitor closer to his head and turn up the receiver by my bed. There seems to be a lot of background noise in the receiver on the second floor but maybe that will serve as “white noise” and won’t disturb my sleep. I also put the call bell from the game room by Warren’s bed. Its sharp ring will most likely come through loud and clear. I certainly hope so – I felt terrible that I wasn’t there when Warren needed help. We will test the new system tonight before lights out. His room is right at the foot of the stairs and mine is right at the top. I can certainly be there quickly if I hear him call.

Warren slept through his feeding this morning and into the afternoon in his bedroom. While he slept, I took the time to make necessary phone calls regarding our change to Medicare, Medigap, etc. for Warren and my continuing insurance with Blue Cross.

At about noon I realized I should start making the spaghetti afternoon lunch that I promised myself I would cook for Kate and Jay when they arrived from their second premarriage counseling appointment with our minister. Reverend Susan was giving them a “test” regarding compatibility and expectations - They think they passed it!

After getting the lunch underway I went to rouse Warren. He didn’t seem to fully wake up but he allowed me to help him to the commode, get him dressed and out to the sunroom. Almost immediately upon arriving at the couch Warren was tired again and needed to sleep. But before drifting off again, he managed to tell me that he would like to join us for some spaghetti. We invited Daddy to join us, too.

The kids arrived at about 2:00 - later than I anticipated. I had given Warren his Viokase and other meds by tube already so I fed him his spaghetti at about 1:40. He had a few bites of spaghetti and a small scoop of ice cream then he was off to sleep again. He woke up once to use the commode then went back to sleep until 6pm.

Jay spent a couple hours after lunch working on our back yard pond. The waterfall is done now, the pond is filled and Jay and Kate introduced me to some of the wonderful and surprisingly tame frogs that have taken up residence there. Next week Jay and Kate will bring a water lily and some water plants to complete the pond eco-system environment. Jay and Kate left around 5pm after we talked about many things for an hour or so. Warren didn't wake up for them to say goodbye to him so I passed it on with their love.

Warren is finally awake now and watching TV in the sunroom. I may go join him while he watches Jeopardy and try to catch a nap after setting up his evening feeding. For some reason I’ve been kind of tired the last few evenings and I think a nap might refresh me so I can make it through till bedtime. I'm hungry for popcorn so that will be my evening treat.

Have a good night, everyone! Thanks for checking in and for all your prayers and best wishes!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Thursday, August 6, 2009 1:55 PM, EDT
Arnetta & Warren Journal.

I have been told by many of you that all my friends are worried about me not getting enough rest. So since I’ve reported being tired for a couple days, I feel I should reassure all of you that I am really doing fine. I got lots of sleep (8 full hours) last night and I feel much better today! Maybe I’ve finally made up for the less than four hours of sleep on Sunday night/Monday morning after Daddy’s birthday party. I chalk that restless night up to having coffee too late in the day plus the rebound effect of the beer I had with dinner. Boy – those vices can get you every time!

As for my outlook on our situation, I once said, "As long as there is life and breath, there is hope." However, as Warren's life and breath continue to decline, my hope declines along with them. I need a large glimpse of that miracle we are all praying for to revive my hope for Warren’s life right now, so I am watching for it. Whatever happens, though, I know God has a plan and Warren and I will be okay in eternity, even though we may travel separate roads for a while.

My present life is a challenge; there is no denying that. I am, as my friend Gwen W. says, doing everything + that is "humanly" possible for Warren. I just wish it were enough to bring him back to me!

As Gwen suggested, I am “glad that Warren does have times when he's close to the person he used to be in respect to interest and conversation. ( I ) cherish those times and know that ( I ) am blessed to have this opportunity to be with him as he is, was, and will be.” I'm certainly trying to be upbeat but I feel so bad for Warren that it's hard to feel really joyful anymore. Seeing him so weak and frustrated with his weakness is really hard. Never having a chance to enjoy that retirement together that we dreamed about so often is heartbreaking, too. Since we were in the midst of tax season when Warren got sick, he was working as hard as he ever had - and through tremendous pain - until he just couldn't do it anymore; then to find out he had a "death sentence" kind of cancer - it's all so overwhelming at times. Forgive me please; I'm going on, aren't I? I know I need to concentrate on the good things. Early on in the disease, when we both held out hope for hope, Warren would say things like "at least this has brought us closer", and "I'll never doubt that you love me again". (There's another whole long story - another time!)

Gwen W. also wrote, “Nighttime does strange things to patients and as lucid as they are during the day and or evening, and regardless of promises made that they will call, ring a bell, etc...oftentimes it is just not possible for them to do so.” Yes, Gwen is right. I can see that, too. During the night and early morning is when Warren has been most confused in the past few weeks. Yet I'm always amazed and happy each morning to find that he has successfully used the bedside commode at least a couple times during the night. And the good news is that the bell did work last night at about 2am. Warren rang it and I went down to find he was cold again. I closed the windows, pulled up his covers, got him an extra blanket and kissed him goodnight again. I felt so good that our solution had worked - at least this time!

The rest of this journal deals with some recent validation of my purpose – some of the reasons I keep writing besides, of course, for my own release and getting "Warren updates" to all of you……….

A good friend from chorus, Cathie Cheslak, wrote in the guest book……………..
Thank you for giving me such a personal and wrenching glimpse of your daily experience.

My Mother died at home 51 years ago and I never realized what my Dad went through, as he was one of her caregivers, along with 2 other wonderful women. (This was way before Hospice.)


A new and good friend from NetCookingTalk.com, Pie Susan, wrote………………..
Arnettamae, the last journal entry is by far one of my favorites. It is these quiet conversations that you have been able to share that you will remember most fondly. Bless you!

To my journal entry below, I received heartfelt replies from another friend at NetCookingTalk.com – Wasabi (Linda), who often refers to herself and me as sisters in this journey……………….

On August 4 I wrote: “There were weeks at a time earlier in Warren's illness when we didn't share feelings and things. He was in his own world and when I tried to knock, he didn't answer. I felt so isolated from him then, and in spite of family and friends being so wonderful to me, I still had a strong sense of being alone in my private life. Seeing Warren every day reminded me that I was supposed to be married to a lifetime partner, but he had become a silent partner. I talked a lot to God back then and my conversations with Him, as well as support from friends and family and keeping up with Caring Bridge served to keep me sane.”

Linda wrote: “It is this paragraph that taught me I'm not alone in feeling like this. DH and I are in this stage now and I feel so lonely.”

I replied: “Dear Sister in my journey, Wasabi (Linda), I felt tears come to my eyes for you when I read your comment about the isolation you are feeling now. I remember so well how hard those days were for me. Perhaps in knowing that you aren't alone, you will feel less alone. When I was experiencing the loneliness, I reached out to friends that had had very ill or dying spouses and they assured me that this marital disconnection is not an uncommon response among the terminally ill and it is, in all likelihood, temporary. Please feel free to e-mail me anytime at arnettamae@twmi.rr.com with any questions you have that I may not touch upon in my journal. I publish my private journal to keep people updated on our beloved Warren AND to help others deal with a loved ones terminal illness. If I can help others learn from what I am going through I want to do that. If any good can come out of this heartbreaking journey Warren and I are on, it may be knowing that our story has been helpful to others, and that will ease the daily pain we endure.”

I send my love and support to you. Arnetta Mae



Linda wrote: “Arnetta we are Sisters. Your journal has brought me into your life and into your home. I wish to tell you that you have helped me immensely along my journey. I am learning so much from you about caring, patience, love and understanding my sweet Bo. As of today, Bo and I are as one again, but it changes day to day. Like Warren, Bo was a strapping big man, 5'6, 220 lbs. I barely hit 5'. He is just a shadow of his self now. Like Warren, his passion is bowling. He misses it terribly. I do believe in prayers and I do believe in miracles. I pray for miracles for our warriors. I suffer with you. I cry with you, and I pray with you. Please place a kiss on Warren's cheek for me and tell him someone across the sea sends her love and prayers.” Done, Linda!

With Warm Aloha from one sister to another, Linda


So thank you to all of you who read, think of us, pray with us, write to us, learn from us or in anyway connect with us! You have all enhanced our lives with your presence!
 

arnettamae

New member
Dear Susan, I tried to answer your private message privately but for some reason, the program wouldn't work. Anyway, you are very right - Warren and I need to talk about lots of things, not just the funeral.

Warren and I have talked about a lot of stuff like you mention but there are a few things I have yet to learn - like running the sprinkler system, the compressor and even the TV remote. Fortunately, Warren mostly was involved in handling the business and investments and I pretty much handled the household stuff including all the shopping, banking and bill paying. I also have had to do Warren's designated chores from time to time so I can do most of those, too, with no problem.

The businesses are closing and I'm hiring help with that. It is too stressful for Warren to be involved.

Warren was very good with investments but found out it was just too much for him to handle along with our thriving businesses so he handed that off to a trusted friend, Frank, who is now our professional financial planner. Frank is a top notch guy who loves us both and is making sure I am taken care of.

Warren's x-law partner, Dale, also loves us both and has helped me handle all the red tape involved in SS and insurance issues. Dale's wife, Celeste, helps me with a lot of household stuff.

Being an attorney, Warren has all our legal affairs in order including trusts for us.

In short, I have been extremely fortunate to have so many supportive people in my life. So all in all, I feel that I will be okay on my own as far as logistics go, but my heart? Now that is another matter!

Unfortunately, Warren doesn't want to talk about the funeral so I have made steps to plan that, too. Basically, we know we will both be cremated and sprinkled in our church courtyard memorial garden. Beyond that Warren doesn't want to discuss anything. I need to work him up to it before our minister gets back into town. Reverend Dale gave us that as a "homework assignment" while he is on his two week vacation. It looks like Warren will hold on at least till Dale gets back. I hope for that and beyond.

Thanks for all your continued support. I know you understand because you and I have a lot in common. I cared for both my husband's parents in a lot of ways and also my mother who had Alzheimer's for twenty very long years (I know why they call it "the long goodbye"!) We were out of town with the grandkids at Disney World when Mom went into her final sleep - she waited until we returned to die so I would be there with Dad to comfort him. We arrived home at 5:30am and went to bed after driving straight through - a little voice pushed us all the way from Florida. My mother's estimated time of death was 6am!

Dad lives with me now and at 95 years old he slips more every day. His body is still going strong, but he feels pretty "dumb in the head" as he calls it.

You and I are definitely nurses in action, Susan. I don't have an official degree, but I feel as if I've learned the trade in the "school of hard knocks". My brother and my sister both have Alzheimer's now, too, and I try to support their families from a distance as they care for their parents. It has been a tough few years BUT I'm tougher for it and God is on my side, too. I live by the saying, "Don't tell God how big your storm is, Tell the storm how big your God is!
 
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PieSusan

Tortes Are Us
Super Site Supporter
Yes, I have been called, Nancy Nurse more than once. The surprise is always being mistaken for being a doctor when someone is hospitalized. I can rattle off medical history and read the medical notes and understand all the condions and meds. It is the law school training that makes one able to understand other disciplines and to do research.
My father was very well prepared as well but there were still things that were unknown to me. It is hard to be on top of stuff. I didn't know where the septic tank was to tell the cleaner. I didn't know where access to some plumbing was. There were accounts and collections. There were issues of insurance. It was amazing how much my father juggled during his day. I had to do his jobs and my mom's jobs. It left very little time for me. I often slept with one eye open and was exhausted--I didn't want to miss any moment of the time that I could spend with my father because I knew it was so finite and I knew he had so much to teach me and tell me. I had a notepad and took notes all the time. He use to just make lists for me and tell me where this and that was or how to deal with whatever would arise. It is a lot to absorb and take in.

Best to you always, hugs, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Friday, August 7, 2009 5:32 PM, EDT
Warren & Arnetta Journal


Warren is having a fairly good day today. Mercifully, there is still no pain to contend with and he still sleeps comfortably up to 90% of every day. Today he says he feels much weaker than he did yesterday, and he felt weaker yesterday than the day before. That seems to be the trend now. His speech is harder to understand again and his breathing is more labored. He is also much less able to remember how we work together to get him dressed and the order of the steps we had established to accomplish each task in his day. He always asks, “What’s next?”

On the positive side, Warren is still tolerating the tube feedings and the many supplements I crush to put in the tube feedings. His vital signs are stable and his elimination – both urine output and bowel movements are better than his previous normal. Spread between the three tube feedings are one crushed multiple vitamin (chewable Centrum), one Vitamin D (1000mg), one Vitamin C (500mg), one low dose aspirin, and, of course, his Viokase (pancreatic digestive enzyme tablet) – one for each meal. The vitamins are recommended and help to balance out shortcomings in the cans of formula. Liquids I add are Megace (for appetite), Senna (for bowel function) and his quarter cup of warm prune juice. Gelatin capsules I empty the powder out of are his two ZMA (Magnesium, Zinc and B6 for bowel function), two Hydrazine sulfate (to fight the Cancer Cachexia) and his three Fruit Plus and three Vegetable Plus. After each feeding I flush his tube with one half cup of water containing 20 gas prevention drops. Thankfully Warren is never bloated or uncomfortable anymore.

As I mentioned earlier, lingering residuals have forced me to cut down on the number of cans of formula I give Warren from 6 to 4 and one half cans. Hospice suggests that I continue to work my way down to three cans but I don’t want to rush that step. Warren is painfully thin and emaciated and he is still very concerned about keeping up his calorie and nutrient intake as much as possible.

It seems that Warren’s hope of his survival still springs eternal even though mine is fading with every passing day. I either know too much or not enough, I'm not sure which! Warren still doesn’t want to consider a DNR (Do not resuscitate) order, so if the time comes to make that decision it will be extremely difficult for me to do. I don’t want to see him suffer anymore; however, if Warren chooses this life over the alternative, I don’t feel that I have the right to take that away from him. I pray with all my heart that God spares me from having to choose for him.

On a different matter, there is something I’ve been wanting to journal about for a long time and an e-mail from my friend, Carole, opened that door for me today.

Carole wrote: Your journals have shown so many others your beauty & strength, things you never thought much about in an earlier time.

My response: I am in awe of the fact that many people say they think so highly of the job that I am doing and, also, of me as a person because of it. At the same time, however, I'm fully aware that I am doing no more than many, many other caregivers around the world are doing or would do if circumstances should warrant it. In fact, in many cases, other caregivers have been doing it far longer than I have.

Heaven's, I'm not doing nearly as much as my friend, Carole, who wrote the praise above and below, has done in her lifetime. The last several years have handed Carole a plate overflowing with catastrophies that would destroy most people, but she has come through it to date with her strength, humor and joyfulness intact. Yes, Carole amazes me! In so many ways, she is, and has long been, my mentor.

No, I'm not doing more than other caregivers, not even as much as many do - I just write about it!


I feel like I can see God with you during these traumatic times.

I know that God is with me - how else could I, or anyone, do this? I certainly know, too, as she herself does, that God is with Carole; she also attributes her strength to Him. Carole and her family have endured so much and still manage, as she says, "to continue this life mostly with joy."

One of my favorite sayings is, “Don’t tell God how big your storm is…..Tell the storm how big your God is!

I thought there were times when Reading about your daily trials lets all of us know how difficult it is to care for loved ones who can't care for themselves. People who go through these trials seem to always understand what you're going through, often without discussing the situation.

I admire you for writing daily; I don't think I could do it. You have helped many people with your selfless & heartfelt journal entries. Of course, I am with you daily as I know many others are. My love & prayers are with you each & every day.

I won't say that my writing is entirely selfless because it is almost always something I truly enjoy doing. However, sometimes it is more selfless than others. There are nights when I'm so tired and uninspired that it's all I can do to sit here and flesh out a thought for the journal. But I do love to write - so much so that even on those nights when writing doesn't come easily, I still end up deriving some pleasure and satisfaction through the process.

Those times I struggle to write are the times when I think of all the Caring Bridge readers out there who say they check the journal every day wondering how Warren is doing. That thought spurs me on to write something - anything, just one sentence! Sometimes my initial spark of an effort catches a bit of wind from another thought and the spark lights an ember. If I'm lucky, with each word or thought I add as fuel, the ember becomes a blaze and a journal entry full of enlightenment and enduring meaningfulness results. Writing is always an adventure and I never tire of the journey.

So I send my heartfelt and most humble thanks to everyone of you who chooses to take this journey with my beloved Warren and me. Knowing that my words have helped so many has truly brought me joy in this time of terrible sorrow
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae wrote, "I pray with all my heart that God spares me from having to choose for him."

This has been my prayer for my mother and my sake. Fortunately, she wanted a living will but I pray I do not need to use it.
 
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