Cancer Cachexia


Food Sound Eng.
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Tuesday, July 7, 2009 8:41 PM, EDT
Arnetta &Warren Journal.

Chemo is never fun for Warren but today it was truly grueling and Warren is totally spent. The nursing staff took last Friday off for America’s birthday party so the chemo room was still backed up today. Several patients were there for very long chemo treatments so no chairs opened up. Far from getting one of the three private areas we had hoped to get for our final scheduled chemo, Warren ended up getting his chemo in one of the padded straight chairs in the visitors’ line. I was fortunate to even get a chair to sit with him. One good piece of news is that Warren’s numbers were actually UP today from last week!
Warren, as always, didn’t talk much during chemo, but the chemo patient on the other side of me, Sandra, was very chatty. She was also having her last treatment (breast cancer this time and colon cancer previously) and was deemed cancer free according to her recent tests. Sandra and I talked for more than an hour about all kinds of things. At the end of our conversation, Sandra found a kindred soul in me when she tentatively announced that she believes there are other effective treatments out there less toxic than chemo but those who support them are being silenced by drug companies. I agreed but told her that Warren and I believe in a dual approach. We know people that have been cured by chemo so we don’t summarily reject it, but we also believe in experimenting with other harmless treatments so we are doing that, too. I quickly mentioned Rife radio frequency and Hydrazine Sulphate, then it was time to go.
Warren and I came home to find Celeste’s car still in our driveway. Just as we were leaving for chemo, Celeste had arrived and nabbed Dad to put him to work as her plumber’s assistant. She aimed to replace the sink in our master bedroom bathroom with another sink exactly like it; that is, exactly like it except for one thing - the “new” sink is free of ugly chips and a 4” in diameter corroded rust spot around the overflow drain. That huge, ugly, rusted spot reflected front and center in the large mirror over the vanity, making it stick out like a sore thumb every time we entered the bathroom. Celeste had seen the “new” sink in the stuff I cleaned out of the bedroom corner and immediately vowed that she would put it in for us with Dad's help. Thanks to Celeste and Dad, the bathroom just improved a hundred fold! I knew it would look nicer but I’m totally amazed at what a huge difference the sink makes! Now I can’t wait to rip the old wallpaper down and paint the walls!
Okay, since I mentioned my “new” sink, I have a confession to make. In my past not entirely secret life I was a trash picker. I learned it from Dad. That sink was only one of the wonderful treasures brought home from my lucrative walks with my good friend and neighbor, Diana, through our local subdivisions . We were quite a pair and we had a lot of fun! Among the hundreds of useful things I brought home besides that sink, were the expandable solid wood table I’m working on right now, a beautiful Wonder Horse, 4 or 5 Power Wheel Jeeps in good condition (over $300 each when new) with batteries ($50 each at Toys R Us), three Lil Tykes picnic tables and two turtle sandboxes, several cool bicycles and a zillion other wonderful things for our granddaughters. I even brought my dad his Hammond organ from the end of someone’s driveway, and our family room couch and loveseat (in the picture on this site) was a neighbor’s furniture set which was put out to the curb in very near perfect condition. And that’s just the tip of the iceberg! People in Farmington Hills have very high class trash! It’s very hard to leave it there for the garbage truck when I know I could use it to good advantage! Besides, it’s my civic duty to keep such things out of the land fills. All of you who know me well are aware that I live and breath the “Three R’s” – Reduce, Reuse, Recycle.
There is one last thing I’d like to mention before I close. Dad often mentions how much he misses golf and hopes Warren will soon be well enough to go with him again. Since Warren first got sick Dad has always encouraged him to get better so they could get out and golf together first by spring, then by summer, now by fall. Unfortunately, I really don’t see that happening this summer or fall and I believe Dad is starting to get the picture, too. It is sad, especially when I know Dad may not have a lot of good summers left.

Warren and I are both very grateful that Lois and Jack Mumford have been wonderful about getting Dad to bowling every Friday. We all appreciate it very much and they say they have fun, too. If Dad could get in a couple rounds of golf, his summer would be complete.

We’d really like to see Dad get out a couple times before the season is over. Are there any golfers out there who wouldn’t mind taking him out for a round or two of golf at a fairly easy course? Dad has an arm that isn’t two good because of a snapped tendon, so I believe Warren would hit the first drive for him and Dad would play the ball from there. Please let me know if that’s something you are able and would like to do. We’d all be very grateful. Warren feels badly that he is not able to get out with Dad and I know they would both be very happy if someone would do that in Warren's stead.

Thanks so much to all of you for everything from thoughts and prayers to acts of kindness. You have served to make a sad situation so much more bearable than it would otherwise be. We are so very grateful. God is good and he lives in all of you!

PS. By the way, still flexible after 42 years - Warren and I did alright sleeping all mixed up last night and the bedroom looks even better with the new arrangement in place!


Tortes Are Us
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I got a big kick out of "sleeping all mixed up" because those kinds of changes although feel odd are very good for one's brains' health. Anytime you can do things a different way, brush your teeth with your other hand are actually helping your brain health.
Best to you always,


Food Sound Eng.
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Wednesday, July 8, 2009 8:52 PM, CDT
Warren & Arnetta Journal

Warren has been a zombie today. He’s very unsteady on his feet and even getting into his wheel chair and from the chair to the toilet required my assistance all day. At this point Warren says that he needs some time away from chemo – he mentioned a couple months but that could change if he starts to feel better before it’s time to decide. The good news is that he continues to have good bowel movements with the addition of the warm prune juice to his daily diet.
We’ll see if more chemo turns out to be Dr. Doyle’s recommendation at our follow-up appointment next Thursday, July 16. Everything depends on the results of the CT scans being done next Monday, July 13.
The original hope (on March 19th) was that the chemo would take care of the cancer in the pleura and the lungs so that the large pancreatic tumor could eventually be surgically removed. Ideally the pancreatic tumor will also be reduced in size from the combination of chemo and Tarceva, the oral chemo pill thought to aid in curing pancreatic cancer. We believe that would be the best case scenario and that’s what we pray for.
The worst case scenario, in our opinion, is that the cancer never improved beyond the “stability” reported after the first set of seven chemo treatments over a seven week period. If that is the case, it would mean that Warren has suffered needlessly when he could have been enjoying his last days, and even more frustrating, we could have been exploring alternatives other than chemo.
If, God forbid, the worst case scenario does turn out to be the case, Warren will probably wish he had followed Dr. Doyle’s and the chemo nurses’ joint recommendation to cease doing chemo and go on Hospice. It was too difficult for Warren (and me) to give up hope at that point and I needed to support his call.
Warren and I are both very tired tonight. Between 3 something and around 5am I alternated between dozing and watching the hands of the clock crawl through the hours. Finally around 5, just as I was figuring I should just get up and go get a start on this journal, I fell back to sleep until my usual 6am. I looked forward to coming down, and after feeding the three cats, getting my coffee and breakfast bar and sitting in front of the computer, only to find I had no Internet Service! I was so bummed since checking e-mail and the Caring Bridge site are the first things I do every morning. I took care of laundry and other asundry non – noisy chores while periodically checking for a connection but to no avail. The Internet didn’t show up until 8am and Warren woke up right on time. From then on, my day was very full and I could get very little computer time in.
Chances are good that not too much new or noteworthy will be happening in the next few days and I have “many irons in the fire” right now. Please don’t worry if I don’t find time to write every day. I know I’ve said that before and ended up writing anyway – it’s in my blood. I will definitely let you all know when Warren feels better. He assures me that he can’t possibly feel worse. His exact words were, “This has got to be the bottom.” And I will, of course, post full reports on the outcome of the tests and the consultation with Dr. Doyle next week. Meanwhile let’s hope and pray I can make those GOOD News!


Tortes Are Us
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Arnetta, Warren chose life because he loves you and wanted to stay with you. You both understood what you were doing when you made that choice. To have regrets when you did the best you could under the circumstances is needlessly beating yourselves up. You are taking a chance and a lot of people are praying for you. There is always Hospice. Had you not tried, you would have probably wished that you had. Just let it go, stay in the moment and enjoy the time you have together and stop borrowing trouble.
Hugs, Susan


Food Sound Eng.
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Thursday, July 9, 2009 7:56 PM, EDT
Warren & Arnetta's Journal

Warren was able to muster enough energy to let me help him get his shower today. He formerly took a shower every day of his life, but he is just too weak to get one every day now. Also, his skin is so dry from the chemo that it flakes off in large chunks and daily showers certainly wouldn’t help that problem.

Warren now gets showers twice weekly and that’s when we check his weight. I’m happy to report that he has regained some of the weight he lost while he was in so much pain from constipation. This morning we posted a weight of 142.4 pounds – higher than the 141.1 on July 5 but still less than the base weight of 143.2 on the new scale. Our goal is simply to stay above 140 pounds so we are happy so far.

True to last night’s stated determination to have a better day today, Warren made a valiant effort to walk for every trip to the bathroom. My only contribution to each trip has been to help steady him when he stood to use the walker. The increased walking has been a very difficult goal for him to accomplish so I’m really proud of his efforts!

One of Warren’s major problems is still swallowing. It’s not just the pills that get caught anymore – even water and prune juice don’t always go down right. The largest pill Warren must take is the football shaped pancreatic digestive enzyme, Viokase. He must have it every time he takes any food by mouth or stomach tube, so he always panics when it’s time to take nourishment. Viokase is available in liquid form but Warren would need to ingest 20 little cups of liquid to equal one pill thus leaving insufficient stomach room for his formula – obviously not practical. He tried chewing the Viokase a couople times but it was incredibly bitter and he tasted it for hours afterwards. This afternoon Warren thought biting the pill in half might help but it was still wide in the middle so the first half got stuck. Fortunately, I then discovered that the pill divides easily into quarters and he had much less problem taking the last two chunks. I don’t know what we can do about all the other pills. We don’t see how adding them to another food will help since Warren chokes on food and water, too. Are there any other ideas among all of you? We’re very open to suggestions. I’m planning on calling the doctor tomorrow as well.

You probably noticed our new photo. It was taken by very good friends of ours in early March just a few days before Warren was diagnosed with pancreatic cancer. I love the picture of Warren. I wish I hadn’t had my eyes half closed but otherwise, it's pretty good of me, too.

The picture takers, George and Sharon Julien, were visiting us from Tennessee when they took the picture. While they were here they showed us a quilt piece they had made using pictures reprinted on fabric and we were very intrigued by the quality of the process. Well, guess what – this picture now adorns a wonderful sofa pillow in our sunroom. It was a surprise gift that arrived from George and Sharon on Tuesday afternoon. The incredible photo to fabric process is a business for George and Sharon so let me know if you are interested in your own photo pillow, shirt, quilt, etc. and I can pass that info on to them.

I'm sorry about the multiple notifications this morning. That's never happened before when I edit the entry, so I'll have to be more careful to get it right in the first place. I don't do a thorough job of proofreading at night when I'm tired, so I usually find things I want to change very early in the morning before most of you read the entry. This is the first time Caring Bridge has posted each of those changes as updated Journal Entries. Maybe it's because I used the preview feature so next time I'll try it without doing that. Just in case, the duplication happens again, though, you can probably go by the time signature - if all the notifications say for the same time it's probably for edits so just open the final one you receive with that time signature.

It’s time to say goodnight again. Thanks for checking in. A special thanks to those of you who have sent notes and signed the guestbook, too. I do so wish I could answer each and every message individually. On some rare days I have actually come close, but each day is different and carries its own set of time consuming challenges. Please know that we treasure all your messages of encouragement and appreciation more than words could ever say. It’s a wonderful way to start the day!


Food Sound Eng.
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Friday, July 10, 2009 3:04 PM, EDT
Warren & Arnetta Journal
Thank you to all of you who contacted us about swallowing pills. I knew there would be answers out there! All of the answers are good ones but Warren has special considerations that possibly make some of them unsuitable for his situation.

Several people have mentioned putting the pill in applesauce (or pudding for similar reasons) but Warren has been reluctant to try it. One worry is that he has to take so many pills he'd end up being filled up with applesauce thus leaving insufficient room for the very necessary formula. Even taking water with pills seems to fill Warren and interfere with the feeding schedule at times. Whatever is in his stomach – formula or water – is drawn out in the test tube as residual and we can’t feed him again if the test tube is full.

Warren apparently has a very small capacity for food, and the 16 ounces of formula at each feeding pushes his limit for the entire day. The 48 total ounces of formula, the ½ cup of nothing short of miraculous warm prune juice, and his two squares of dark chocolate (which he truly enjoys) seems to be the maximum he can handle in a day without painful discomfort. Then there is the added problem that Warren is, with good reason, afraid to consume any food without the Viokase. The Thicken-Up mentioned by some of you may present the same problems that applesauce or pudding might.

Our friend, Ray, offered to purchase and deliver a pill crusher that they use at Henry Ford and other hospitals. The problem with that is that many of the pills Warren takes aren’t the crushable kind. The worst offender, Viokase, is crushable but the taste is so strongly bitter that it would most likely take a whole cup or more of applesauce to disguise it. That’s probably why the liquid form of the pill involves drinking 20 medicine cups full of liquid (according to our doctor). Warren told me today that his tongue is still sore and burned from trying to chew the Viokase a couple times. We hope it's not a permanent injury.

The “Winning Entry” in the “Help Warren Swallow Pills Contest” arrived by e-mail last night, just in time to help Warren with his nighttime pills. Warren and I were both apprehensive when he put the first pill in his mouth and swallowed following the e-mail directions, but his thumbs up let me know immediately that we were on to something! All pills since that time have successfully gone down.

E-mail from Melissa Garr, the walking Miracle Girl:
3 years after my accident is how long it took me to swallow again!

One thing I learned in rehab, that helps me to this day, is to keep your chin toward your chest when you swallow. One would never think to swallow this way, but you shut the opening to your trachea by doing this, thus the only way pills, liquid, or food can go is down the esophagus and into the stomach, NOT into the lungs!!! ;)

I wish you the best & hope these words of advice, (coming up on 12 years of recovery) are helpful---

All my love & God's Blessings-- Melissa- Sent from my iPhone

The minute I read Melissa’s advice, my mind went back to when they put the stomach tube down Warren's nose in the emergency room to drain his stomach and intestines for a period of two weeks. I remember them telling him to keep his chin down toward his chest to open of the esophagus and close off the windpipe. They said that would make the tube go down easier and in the right place. I knew then that Melissa had given us the answer!

Just in case you don’t know Melissa, I include below an excerpt from our “1997-98 Whitehouse in Review” Holiday letter. Hearing or reading Melissa’s story is always a good reminder that Miracles DO Happen. It also reminds me that there are more Miracles to be had and Warren and I might just find one, too. So please enjoy this walk down memory lane with me and with those of you who have met Melissa, as well as the update that Melissa was kind enough to provide me with to finish the story……………………..

Excerpt from our 1997-98 Whitehouse in Review Holiday letter:
There was, however, one very special event this year that makes it shine as a year to remember. Many of you have no doubt heard about the daughter of our Farmington Community Chorus accompanist, Susan Garr…….
Melissa Garr, just 16 years old, was injured in a freak accident on July 23, 1997 when an apparently healthy 5” diameter tree branch fell 40’ and knocked her into a cement poolside deck. Melissa was resuscitated twice on her way to the hospital by helicopter.
In the deepest possible coma for two months and on life support, Melissa was not expected to live. She showed minimal brain activity and then only in the lower brain stem which controls the most basic of body functions. Doctors said that in the unlikely event that Melissa did survive she would forever remain in a totally vegetative state.
With Melissa declared brain dead, we all grieved with our beloved friend, Susan, her mother, and talked about setting up a music scholarship fund in Melissa’s name after her death. But, we also kept praying for a miracle.
The miracle came late in September when Melissa began to wake up from the coma. She started to communicate in sign language,** then by writing on a note pad. As Melissa progressed we could see that she was heading for a complete recovery. Her memories, knowledge and sense of humor were intact. Then she began the long road to physical recovery.
Melissa came to our 1997 Holiday concert. She walked across the stage using her walker while we all cheered and cried for joy, and then she talked to television reporters. Melissa is back! What more can be said? Miracles DO Happen!

**Note:“sign language” refers to signing for the deaf that Melissa had recently taught herself in school.

Update from Melissa:
That's beautiful! An add-in, should you choose to include it, is about when I started writing & got my sense of humor back: Mom didn't know I could write yet, so I motioned for a pen and paper. She thought I was going to draw pictures, or scribble; but I wrote; "So Mom, are you impressed?" her response was: "Am I impressed? Is the pope catholic?!?!!!"

As for a postscript:
It's about 2 more weeks until the 12-year anniversary of my death/accident.

I believe that I have finally found a reason for this to have happened, & make a very positive outcome, in the end….

As many people know, (and doctors say it is one of the reasons I was strong enough to pull through & fight my way back to life), I was always a very stubborn person. I had dreams of being a lawyer, or a Supreme court Judge. Obviously, my plans for the future had to change...

After almost 2 years in the hospital/rehab house, I graduated high school, (Edit by Arnetta: with her class!), am currently singing with the 90+ members of the Farmington Community Chorus whom I consider family, have written an unpublished autobiography about my experience to help others in need, earned a Medical Assisting Certification from Schoolcraft Community College, and am now looking for employment in the medical field.

Life is good & I have learned to thank God everyday for all the Blessings bestowed upon us daily!

All my love & God's
Blessings-- Melissa-
Sent from my iPhone

I can’t think of a better note on which to end this day’s journal. Warren and I keep our eyes to the heavens, continue to pray that Miracles STILL Happen and have faith that one might just happen for us. Thanks for joining us!


Tortes Are Us
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Dan, please tell Arnetta that chocolate is very binding and that may be part of the problem with the constipation--even though he is not having much. One needs to walk and Warren cannot do so much which is also another reason why he is so bound up. My guess is it is also a side effect of meds. It was with my father. Hope this helps.


Food Sound Eng.
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Saturday, July 11, 2009 6:34 PM, EDT
Arnetta & Warren's Journal.

Warren is having a pretty good day today but it has been punctuated by long periods of mysterious weakness at which time he needs my assistance to get him to the lavatory by wheelchair. Yesterday was closer to the last chemo and he used the walker all day. Today he only used it once. Warren gets very frustrated with himself but he just can’t help being overtaken by exhaustion for no apparent reason. He has also fluctuated between hot and cold all day, and keeps me hopping turning the overhead fan on, then off, again and again and putting his shirts on and taking them off over and over again, too. Maybe all his symptoms are interrelated somehow.

In good news, I’m happy to report that we have developed successful systems for our major pill problems of late. We have all of you to thank for pill taking hints because it turns out that a combination of methods is what we needed.

Warren still struggled at least half of the time to get that troublesome Viokase down so we developed a combined system. First, I cut the pill in half at an angle to avoid the thick end of each piece at the middle. Then we put each half in a scant teaspoon of applesauce and he swallowed with his chin toward chest. Before Warren tried to swallow the pill, he would concentrate on the spoon of applesauce and audibly say, “I’m just eating a spoon of applesauce; I’m just eating a spoon of applesauce”. The system was working very well but obviously Warren was still nervous about it.

Then I got an e-mail from Debby, one of the nurses at Henry Ford who cared for Warren there. Small world – Debbie is also a neighbor and the niece of one of my best friends and across the street neighbor, Diana.

Debby wrote:
I have one more suggestion for the icky Viokase. If it can be crushed, crush it and mix it with a little bit of water (20ml or less), and flush it through Warren's feeding tube. All meds crushable or not end up in the same place. I would crush what you can and put in his tube. Just flush with a little bit of water afterward to make sure no medication is left in the tube.

It would be less to swallow and he wouldn't have that horrible aftertaste. Just a thought.

Keeping you and Warren in my thoughts.
Debby (Diana's niece)

This is the best suggestion for the Viokase yet. I had wondered about crushing it and putting it through the tube but fear of mixing it and possibly plugging up the tube made me hesitate to try. Viokase is, however, VERY crumbly and I was sure I could crush it into a very fine powder; so, after reading Debby’s note, I planned to crush the Viokase, mix it with some diluted formula and put it in the tube before we started the next feeding. Then the feeding itself and the flushing afterwards with clear water (and added gas drops) would clear the feeding tube of all the medication.

I went to my stash of past nursing apparatus left from caring for my mother and found a super nice pill crusher and a pill splitter that I had put away. Sometimes it pays to be a “pack rat”. I tried crushing the Viokase for Warren’s next feeding and it was pulverized – looked like Mount St. Helen’s ash! We used the crushed and diluted medication by tube for Warren’s 4:30 feeding and I’m thrilled to say that it worked like a charm. Warren is very relieved that he never has to get that huge pill down again!

The other pill Warren has a lot of trouble with is Uroxatrol (generic Flomax) which may be somewhat crushable. I wonder, though, if it should be crushed because it has three distinct layers – a white layer between two yellow layers. Can any of you nurses tell me if the layering means it is supposed to dissolve in a certain sequence and therefore shouldn’t be crushed even if it could be?

The Uroxatrol is as hard as a rock. I’ve tried to cut it in half and almost broke the knife before even making a mark on the pill. When the pill finally began to give way to the cutting edge of the knife, it shattered into little chards like “Corelle by Corning” does when it hits a hard surface just right. I tried to put the pieces of the pill in the pill crusher and they refused to pulverize like the Viokase did. All things considered, I don’t know what we will ultimately do with the Uroxatrol.

In other good news, we seem to have totally licked the constipation problem with a combination of ZMA (Zinc, Magnesium and Vitamin B-6 capsules), Colace and the warm prune juice daily.

Regarding the constipation, my friend, Susan from Net Cooking Talk, has informed me that chocolate is binding. I’m very surprised about that. I love chocolate and at times in the past, I think I remember having the opposite problem when I occasionally indulge my cravings. At any rate, Warren enjoys his dark chocolate treat a lot, and its good antioxidant content and high calorie / low volume characteristics make us feel inclined to continue it. He only has two small squares with his evening tube feeding.

Personally, I’ve had a happy and productive day today. I felt a bit out of sorts and foggy all day yesterday. Could it be because I forgot to turn on the ionizing Himalayan salt lamps in the sunroom yesterday morning, or did I forget to turn them on because I felt out of sorts and foggy? I’ll probably never know.

I slept well last night next to the salt lamp night-light and woke up feeling recharged – I also turned on the salt lamps in the sunroom today! I don’t know as if I believe all the miraculous claims for the health benefits of these lamps but I have researched and found that they do produce healthy ions to counteract those harmful ones emitted by electronic devices. In any case, they are beautiful and natural and make very attractive night and atmosphere lights so, why not? We have two medium salt lamps for night-lights in our bedroom and three in the large sunroom. I have ordered a few more so I can put one by each of our computers, too, as well as a couple more in the sunroom because it is so large (23’X17’).

Time to say goodnight again. I need to finish watering all the plants in the sunroom while it is still light – it’s much easier to see well then.

Have a great evening everyone. Thanks for your thoughts, your prayers, your notes and your help. All those things are so important and precious to us!


Food Sound Eng.
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Sunday, July 12, 2009 6:45 PM, EDT
Warren & Arnetta Journal

Warren mustered up enough energy to get his Sunday shower this morning. The scale showed we are at 141.5 - still well above maintenance, so we are happy. Some quick calculations told me that Warren is consuming just about enough calories to maintain that weight given his height and weight, so I’m confident that the HZ is still doing its intended and very important job of fighting the cancer cachexia.

Tomorrow is a BIG DAY when we have the CT scans in the afternoon to find out just how much cancer Warren’s body is still fighting! I’m hoping to get test results before our appointment with Dr. Doyle on Thursday at 11am, but the woman who scheduled the appointments seemed to think that even the three plus days was cutting the time line close. I’m pretty sure, too, that no one would be willing to share the results with us without our doctor’s input, so we will most likely have to play the waiting game. Nonetheless, I will try.

The pill saga has continued today.

Nurse Debby wrote:
Unfortunately, the Uroxatral (Flomax) is not to be chewed or crushed according to the literature. I'm sorry I can't give you any good suggestions for that one.

Nurse Pat wrote:
Your best bet as to what can and cannot be crushed is the pharmacist. He/she maintains lists of pills that can and cannot be crushed and will readily give you the information. Also some pills come in liquid form (such as colace and others) and they could be put through the tube. As for the Uroxatral, if it cannot be crushed, ask the pharmacist if there is another generic form (from another company) that could be crushed. If not, there are other medications that help with the urinary problem that he could try (e.g. hytrin, finesteride, etc) and a call to the doctor’s office to call in a script would be easy. Hope this helps.

There was a suggestion that Flomax granules might be taken out of the capsule and mixed with water, but Nurse Gwen wrote:
In respect to pills, technically some pills are not to be crushed and unfortunately, Flomax is one of them. I might suggest that you talk with the “prescriber” of this med to see if there might be another option for meeting this need. Below is a “cut & paste” from a pharm site. You may Google “can Flomax be crushed” and you will receive numerous links. The reason for the “no crush” relates to the fact that the Tamsulosin is designed to be rapidly absorbed from the intestine and is almost completely bioavailable. Absorption of tamsulosin is reduced by a recent meal. The uniformity of absorption can be promoted by the patient always taking FLOMAX after the same meal – ideally daily after breakfast or the first meal of the day. As previously mentioned, the Flomax capsule should be swallowed whole and should not be crushed or chewed as this will interfere with the modified release of the active ingredient……………I do understand Warren’s fear and actual difficulty in swallowing this pill – but see what you can find out because trying to crush it totally defeats the intended benefits.

Then comes Warren and his determination to not be intimidated and ultimately defeated by something so small as a pill. This afternoon, Warren was determined that within the appropriate three-hour time span regarding food intake, etc., he was going to take six pills – ZMA and Colace – which can’t be divided or crushed He didn’t have much fun, BUT he did it and found out that he lived. Now some of the fear is gone.

As mentioned above, three of the pills Warren forced down in his “mind over matter” episode today were his ZMA tablets. Those are a large capsule of Magnesium, Zinc and B-6 to which I can’t help but give credit for my victory over a lifetime problem with constipation, and they seem to help Warren, too. The directions on the bottle say to take at bedtime on an empty stomach. However, we had given up on the bedtime idea because I can barely get Warren’s third feeding in just before bedtime. Besides, he sleeps so much during the day that it’s sometimes hard to define “bedtime” anyway.

I searched the Internet and I couldn’t find ZMA in any form except the large white capsule, so I Googled “ZMA with food”. It turns out that ZMA is actually mainly for use by bodybuilders to help build muscle, but it also happens to be in just the right proportions to facilitate good bowel function, too. The stipulations to take it at bedtime on an empty stomach are strictly related to the bodybuilding aspect of the supplement. Although building muscle tone through exercise was the reason that Warren purchased ZMA originally, it’s not what we care about right now. Tomorrow I will dump the powder from three of the capsules in two of his feedings. Now that's three more troublesome pills per day dealt with!

As for the Colace (Sam’s brand), Warren said those weren’t bad to take, so now I’m down to the Uroxatral. Warren would like to stick with Uroxatral because it works well for him and it’s quite a bit cheaper than Flomax (which is why our insurance company nixed the Flomax in favor of Uroxatral). There is also the assumption that its affects are cumulative (according to the doctor I asked) and Warren might lose some effectiveness if he switches to something else. Uroxatral also has the advantage that it WANTS to be taken WITH food whereas Flomax must be taken 30 minutes after the same meal each day. And finally, I just ordered a three month supply from Medco so we are well stocked. So Uroxatral will get the chin down applesauce treatment at tonight’s feeding around 8pm. This morning that method worked for the morning dose of Viokase before Warren's Ensure Plus in bed. I cut the Viokase into quarters and put it in a teaspoon of applesauce and Warren did great using his mantra, “Okay, now I’m just going to swallow this teaspoon of applesauce”. Like I said, “Mind over matter”!

Thanks everyone, for your help in getting all this pill trouble under control. I’ll let you know tomorrow how the Uroxatral adventure turns out. Just in case it doesn't work, our good friend, Dale, has given Warren a couple Flomax to experiment with (swallowing only). Meanwhile, have a great evening and good night. Thanks for checking in and God’s blessings on everyone!


Tortes Are Us
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Absolutely, a positive mindset and determination can accomplish just about anything. It was what my dad did--he amazed me.


Food Sound Eng.
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Monday, July 13, 2009 6:05 PM, CD
Arnetta & Warren's Journal

HEADLINE NEWS! Hometown Hero Conquers Uroxatral! With shear guts and determination and with his chin down, Warren Wm. Whitehouse swallowed a yucky cylindrical Uroxatral bathed* in applesauce last night (*the pill, not Warren).

Regarding the tests this afternoon, Henry Ford screwed up again so I'm glad I called them this morning. First of all, when I called to make the appointment almost two weeks ago, I had to fax the order to the radiology department because the doctor’s staff had apparently never sent it to them so no insurance approval had been predetermined. The nurse set up the appointment but wasn't positive the paperwork would go through in time and said they’d get back to me with instructions. It occurred to me Saturday afternoon (Of course! - they close at noon on Saturday) that I'd never gotten that confirmation or instructions. I called this morning just to make sure that we were on for 2:30 with arrival time 1/2 hour before and that was confirmed. Then I asked if there wasn't some preparation we were supposed to do. Eventually they got back to me that Warren must drink something 2 hours before so we needed to be at the hospital by noon. Instead, I opted to go pick up the stuff at 11:30 and bring it back here for Warren to take. I'm sure glad I followed up TWICE!

Many people I talk to tell me how efficient Henry Ford is and how smoothly everything always goes. Why doesn't that happen with us? I'd swear on a stack of Bibles that at least half of the times we try to do something there, we encounter a "hitch".

The worst one yet was the emergency room visit that I vowed to write about someday. This is that day.

On the morning of Tuesday, May 5, the home care nurse had finally arrived to give us instruction on using the feeding tube that had been inserted the Friday before on May 1. (The nurse was supposed to be here by Saturday or Monday at the very latest. That’s another screw up by Henry Ford that I did write about in the journal.)

While the visiting nurse was here, Warren was having the “Word Salad” problem (Boston Legal’s term for speaking in tongues) and couldn’t even tell the nurse his own name. I called Dr. Doyle to ask him what to do. Dr. Doyle said that if Warren’s confusion didn’t clear up by the afternoon, I should take him to the emergency room to be admitted for some tests. (Later, I found out that Dr. Doyle’s fear was that the cancer might have gone to Warren’s brain.)

The word salad not only continued – it got worse. By 2:00pm, I called Warren’s brother Bob to see if he could come over and help me get Warren to the hospital. Warren and I couldn’t communicate and I was afraid he would fight me about going to the emergency room since he hates it so much. Bob said he would come as quickly as possible.

I called the Emergency Room at Henry Ford, West Bloomfield, and pre-registered Warren by 2:30pm. They remembered us from the other times and were very friendly and supportive. I told them we would leave for the hospital as soon as my brother-in-law arrived to help and we’d probably be there around 3pm. We did, indeed, arrive right around then. The valet parked our cars and we were admitted to an emergency room immediately. A nurse came in to see us within two minutes and a doctor arrived shortly thereafter. By 4:00 Warren was on his way for a CT scan of his brain. By 4:45 we were told that there was no cancer in the brain, but they wanted to keep Warren overnight because of his extreme confusion. To this point at least, I was very pleased with how smoothly everything was going, and I silently congratulated myself again and again that I had pre-registered Warren early in the afternoon and informed them about Dr. Doyle’s intent to admit Warren to the hospital overnight for observation.

Warren was horribly confused and demanding but was not able to make Bob and I understand what it was that he wanted. I know he was miserable on that hospital bed – they always bother his back. At times Warren became belligerent and frustrated beyond our belief. It’s no wonder he was upset, though, – Warren knew exactly what he wanted to convey but he couldn’t make any of us understand. I could sense his panic and he told me later that he was VERY, VERY scared.

Every now and then, there were two consistent words that we somehow figured out meant “go home”. We kept telling Warren that we couldn’t take him home until he was checked out.

Finally, it dawned on me that maybe Warren needed to use the lavatory so I asked him. He was able to respond with a yes, but by the time they got the bedside commode there, Warren seemed confused about what to do with it. Eventually, we managed to get done and get him back in the bed amid more protests from him. The words that meant “go home” kept popping up again and again.

It was now going on 5:30pm and we hadn’t seen anyone since we were told the results of the CT scan. Finally, by 6pm someone did come in and we were told that they were working on getting a room for Warren. Bob and I asked if they could give Warren something to calm him down and help him sleep because he was very agitated. They gave him some Ataban and that really helped. Finally, Warren became fairly calm and drifted off to a somewhat fitful sleep.

At 7pm a nurse came in and told us that they had a room for Warren so Bob and I breathed a big sigh of relief. Following is a play by play of the next six hours:

8:00 – “They’re still getting the room ready”. Okay, we want a clean room. Bob does Sudoku puzzles, I knit and Warren kind of sleeps.

9:00 – “The nurse is writing up the orders”. Out of desperation I try a Sudoku puzzle, too and Bob helps me. It’s kind of fun! Warren is getting restless again. I worry about Warren getting his necessary medications – Uroxatral and Tarceva, but the nurse tells me “when he gets to his room they will dispense his medication”.

10:00 – I tell the nurse that the person writing up the orders needs a course in speed writing. She promises it will be any time now. Bob reads the paper and does more Sudoku. I go back to knitting.

11:00 – The truth comes out. The “powers that be” upstairs that release the assigned rooms to emergency room patients aren’t letting them send Warren up yet. According to them “Warren hasn’t met the criteria.”

“What”, Bob and I ask, “is the criteria?” Are you ready for the answer to this one? “Warren hasn’t been in the emergency room LONG enough!” The emergency room doctors and nurses are upset and arguing with the “powers that be”. The emergency room doctor is on the phone chewing someone's ears off and still they refuse to send a transport for Warren to get him up to his room (as well as another poor soul who has been there just ½ less than us).

The next hour or so Bob and I spend talking to a nurse about cancer and her mother’s battle with the disease.

12:00 Midnight – Still no transport in sight for Warren. Bob finally decides he had better get home and get some sleep to be ready for his golf outing in the morning.

12:15am – Wow! A wheelchair arrives for Warren and we are finally able to get him settled in his room. I show the nurse his pills and tell her that I have to give him the Uroxatral and Tarceva. She says I can’t because they haven’t been cleared by the pharmacy and now the pharmacy is closed. She says if she lets me give him those pills, she could lose her job. Guess what – I finally start to cry. I tell her through my pent up anger and tears, “He needs the Uroxatral daily for his urinary problem, and the Tarceva is his chemo medication for his Cancer, for God’s sake. He has to have these every night!” By now it’s almost 1am and it’s been a hard day. The nurse relents and says, “Oh, go ahead. If I lose my job, I’ll just go work somewhere else.” She may have said that to dissuade me, but I just said, “If someone finds out, I’ll tell them I did it without your permission.” AND I DID!

As God and Bob are both my witnesses, the preceding story, as unbelievable as it seems, is the Gospel truth! And recounting it again brought shakiness to my hands, a lump to my throat and tears welling in my eyes. I will never forget that afternoon, night and morning! No one should have to endure such treatment – especially someone as sick and as wonderful as Warren.

There I vented! That’s been coming for a long, long time and now the story is told. I’ll send a copy to Henry Ford Hospital unless someone beats me to it. I warned you all in my journal entries on May 6th that the story was growing longer by the minute:

  • Wednesday, May 6, 2009 2:10 AM, EDT
It's after 2am. I am finally home and do I ever have a story to tell! However, I am exhausted and need to take care of the cats and get some sleep so I can get back to the hospital in the morning. ………….

  • Wednesday, May 6, 2009 11:00 AM, EDT
I'm back here at the hospital - I will be spending the night in Warren's room tonight. The stories I'm not telling are getting longer by the minute! …………………..
Oh yes, I remember that morning; when I arrived back at the hospital by 10am on May 6th, just a few hours after the emergency room caper, Warren looked at me and cried, “There you are!!! Where have you been?!?! I haven’t seen you in days!!!” At least it was English; and then I knew we would be okay!

I will let you know as soon as we hear anything about the tests today. I can tell you, thank God, everything went pretty well so far. Have a great night everyone!


Food Sound Eng.
Gold Site Supporter
Tuesday, July 14, 2009 10:24 AM, EDT

I received a call from Dr. Doyle today. Later when I have had time to process everything, I may be able to write in more detail. I promised I would let you know any news but I was hoping it would be good news. Unfortunately, there is no easy way to say it. The worst case scenario I wrote about in the July 8th journal has come to pass:

"The worst case scenario, in our opinion, is that the cancer has gotten worse or never improved beyond the “stability” reported after the first set of seven chemo treatments over a seven week period. If that is the case, it would mean that Warren has suffered needlessly when he could have been enjoying his last days, and even more frustrating, we could have been more actively exploring alternatives other than chemo."

We will now put all our effort into Rife, Hospice and comfort measures for the remainder of Warren's life, whatever that may be.

Caryn is coming to see her Dad and be with me today. Warren and I have talked some, but right now he needs time to come to grips with the devastating news, then we can formulate plans beyond Hospice and Rife.

As always, we appreciate your thoughts and prayers more than words could ever say.


Tortes Are Us
Super Site Supporter
I am so sorry for your bad news. However, you made the best choices you could under the circumstances and I would not waste a precious minute worrying about it now or beating yourselves up. May you find peace and know you are all still in my prayers.


Food Sound Eng.
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Warren Wm Whitehouse

My Story

I, Arnetta, have been Warren's wife since July 1, 1967. We have two wonderful children, their loving mates and four grandchildren who love him, too. Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.
Please read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

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Tuesday, July 14, 2009 11:02 PM, EDT

I want to receive Journal update notification e-mails.
I had just given Warren his Ensure Plus in bed when Dr. Doyle called me on my cell phone this morning. The doctor wanted to let me know that radiology had sent him an urgent message that there are blood clots in Warren’s legs that need to be addressed immediately. If those clots were to break free and enter the lungs, Warren’s breathing could be even more compromised. At first Dr. Doyle recommended the blood thinner Lovenox to be given by injection every 12 hours. The hospital would send a nurse out to train me to give Warren the shots. Then he asked me about whether I thought Warren is a “fall risk”. As doctor Doyle explained, even a small bruise from a fall can put a patient on blood thinners in danger of serious internal bleeding. I had to tell him that Warren is definitely a fall risk. He is so very shaky that I need to steady him even for very few steps. He is especially unsteady on his feet since loosing the feeling in most of his left foot.

Dr. Doyle suggested that we could do an outpatient procedure consisting of putting a filter in Warren’s blood vessels that would help to prevent any clots from going to the lungs. The procedure would require a half day stay in the hospital for the combined surgery and post-surgery observation. We are inclined to schedule the procedure if it will prevent more difficulty in breathing.

I asked Dr. Doyle, then, if there were any other results from the CT scans available. He looked in his messages and saw that the full report had arrived already. When after a moment he said, “I’m so sorry to have to tell you……” I knew that my worst fears had come true – the chemo had failed. By my reaction to the news, Warren knew right away, too. We both knew it was time to call Hospice so Dr. Doyle put in an order for a social worker to call me and get the ball rolling.

It’s important to note that, although “Hospice” has an ominous ring to it, it doesn’t mean we are giving up all hope. To Warren and me it does mean comfort measures will be available for Warren while we search for alternatives – comforts which have not heretofore been available to us through regular medical channels. It definitely doesn’t mean we believe death is absolutely certain within any given time frame.

As our Hospice of Michigan representative, Sharee, explained to us, Hospice eligibility means that a qualified doctor can honestly say, when asked, that he wouldn’t be surprised if the patient were to expire within the next 6 months. If after a year on “Hospice” the doctor would be surprised if something bad happened in the six month time frame then the patient will not qualify to continue on Hospice.

Sharee came at 5:30 this evening and spent three wonderful hours with us. Warren now has Morphine for his pain and I know how to administer it. All his medications have been ordered and will arrive at our door by Fed Ex tomorrow. There is a large oxygen tank in our foyer with 40 feet of air hose that will allow Warren to move freely between the sunroom, the lavatory and our bedroom. He even has a portable tank for journeys outside the home.

Sharee told me that there are now stairway chair lifts manufactured to fit any size stairway, so I will call first thing in the morning to see if we can get one installed on our stairway so that Warren can get up to the waterbed he loves and the master bedroom shower. Hospice would also help us to furnish the first floor room (Warren’s former office) as a hospital room, but doing that wouldn’t make the shower accessible for Warren. Although Warren has been opposed to putting in the chair lift, and more in favor of converting his office to a room for him (with a small waterbed and not a hospital bed), he couldn’t argue with my point about the shower accessibility.


I just got back from taking Warren up to bed. The oxygen really helped him to get up the stairs so maybe we will be able to wait on the installation of the chair lift, but I still need to pin down our future options so I will call the company tomorrow.

Speaking of future options, I was very intrigued by an e-mail from Bill, a young friend of ours, in which he said:

“I have a neighbor who was diagnosed with cancer and he refused to go through the chemo. Instead he did research on alternative therapies and changed his diet and exercise habits and survived. He said they gave him 5 years to live 12 years ago. In some of your daily journals you have discussed some of these alternatives. Maybe it's not too late. Being away from the chemo may give Warren some of his strength back since chemo is essentially poison.”

Bill, if you are reading this please let me know which alternatives your neighbor tried and I will be sure to embrace those first among any others that I will be researching! I’d really love, with God’s helpful guidance, to be instrumental in pulling off a Miracle!

The outpouring of sympathy, best wishes and prayers today was amazing. I shed more than a few emotional and cleansing tears of joy and sorrow throughout the day when I read the wonderful notes from so many of you. They all served to strengthen me in some way or another. Thank you! We both feel so blessed by your presence in our lives! Thank you all for being there and for all your kindnesses from thoughts and best wishes to continual prayers, heartfelt notes and wonderful favors. I will be so happy to share everything with Warren when he is able to again enjoy some quality of life through Hospice comfort measures and his recovery from the toxic chemo.

Having Caryn here for the day was also a source of comfort and strength for both of us. Thanks go to Caryn for coming and to her large family for lending her to us for the day. It wasn’t easy for Tim. He is under a lot of pressure at work but managed to finiggle coming home early to relieve the neighbor who was watching the kids for Caryn until he could get home.


Food Sound Eng.
Gold Site Supporter
I deliver Medication and some small Medical Equipment.
I deliver for Critical Care, (Mostly Cancer Patience) and a couple other pharmacies.
Yesterday was real Joy- I picked up a pump. (His name was John) was in total remission. 1st time I seen him, He was bed ridden completely.
Now he can go where he wants. They believe in Miricles.
If you read Warren & Arnetta's Journal above. Sign their Guest Book, and give them a prayer.

Fisher's Mom

Mother Superior
Super Site Supporter
Dan, thank you so much for introducing us to Arnetta and Warren. I email Arnetta and have come to know her as a wonderful and kind woman. Today's news had me crying at my computer, trying to piece together a message for Arnetta. Thanks for this post now to remind us that miracles do happen sometimes.


Food Sound Eng.
Gold Site Supporter
Wednesday, July 15, 2009 8:30 PM, EDT
Warren & Arnetta's Journal

It’s nice to have the kids around us! Yesterday, we had the pleasure of Caryn’s company and today Jay and Kate arrived around 2pm to spend the afternoon. Warren hadn’t had any morphine for a while so he was alert when they arrived. We were able to have a nice visit and a lunch together with Warren joining us at the table again – at least for a little while; he was too weak to last very long this time.

All in all, today has been a good day. Warren “overslept” until 9am instead of his usual up at 8am. By the time he had his Ensure Plus and his shower, we didn’t get downstairs until after 10:30.

Warren’s weight was down a bit to 140.1 this morning – thank goodness for the .1 margin above our minimum. We will try to build on that. All the happenings of the past three days have caused him to miss two full feedings as well as the chocolate we try to tuck in to boost his calorie intake. But today we hope to squeeze in all the feedings in spite of our late start. So far we are on schedule again. Warren enjoyed two bites of a sirloin burger and a couple potato chips during our late lunch with Justin and Kate at about 3pm but it didn’t interfere with his afternoon feeding by much. Extra calories are good!

Our Hospice nurse, Mary, arrived around 4pm to get acquainted with us. She seems very nice. From now on, Friday will be our regular day for nurse visitation.

So far, I haven’t heard from the representative from Wright Phillipis whom I was told would call today. Everyone I’ve talked to has agreed that it’s a good idea to have a chair lift installed so I’m anxious to check into the cost and the particulars.

We got great news today from our good friend, Dale, who has been working diligently on our Social Security and health insurance issues. As a preamble to the news, last week I had a couple very nice conversations with the woman who is handling our Social Security application. Since I've told her about Warren’s terminal cancer diagnoses, she is willing to let us file for Warren’s Social Security without the 1998 personal and corporate returns and, even better, she says we can and should file for Warren as disabled. I gave the SS representative permission to talk to Dale so that he could follow up with her and coordinate the move to Social Security and Medicare with our insurance. Thankfully, Dale has arranged it so that we will have no gaps in our coverage once we switch over to Medicare!

It’s a huge load off our minds that, as of August 1st, we will be receiving disability checks for Warren, and my Social Security checks will be increased retroactively to reflect a portion of his. And, thanks to Dale, we will not only be covered by Medicare, but also by a suitable supplementary Blue Cross insurance as well as adequate drug coverage. Dale spent many, many hours coordinating all these things and we are truly grateful for his help! I could never have done it by myself.

Tomorrow at 11am we have our follow-up appointment with Dr. Doyle. We will probably hear more details on the test results, see the images of the CT scans and receive printouts of the findings for our records. I will also get a note from Dr. Doyle regarding Warren’s terminal cancer diagnoses to be given to Social Security. Once I give them that note we are “good to go”.

Beginning on Friday, it’s on to plan B for Warren. I’m hoping by then the increased oxygen Warren is getting 24/7 will give him the strength to help me chart a new course for his treatment. The kids and Warren’s brother, Bob, and I are all encouraging him to muster the strength to move forward with alternative medicine. Right now, Warren’s spirit seems willing but his flesh is very weak. We pray that God gives him the strength to keep fighting!


Food Sound Eng.
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Thursday, July 16, 2009 8:30 PM, EDT
Warren & Arnetta's Journal

I didn’t think the doctor could give us any worse news today, but I was wrong. The most devastating revelation is that the cancer is now also in Warren’s liver. Several scattered tumors have begun to grow there. Dr. Doyle showed us the CT scans of the Pancreas, the liver and the lungs. The pancreatic mass has grown significantly thereby engulfing a larger area of the pancreas. There seem to be at least five new tumor sites in the liver where there were none before. Both lungs are peppered with tumors – too many tumors to count.

Our first question for Dr. Doyle was about future options. Before we saw the CT scans and learned that the cancer had spread to the liver, Warren asked Dr. Doyle if surgery to remove the pancreas itself could be done so we could just deal with the lungs. Dr. Doyle immediately assured us that surgery is not an option – first of all, Warren wouldn’t survive it, and secondly, the cancer is too widespread for surgery to do any appreciable good.

There is, Dr. Doyle said, the possibility of more chemo with a different chemo drug – a two-hour IV of Taxol once per week. The side effects of Taxol are much the same as with the Gemzar. The Taxol chemo option is available to us but not recommended by Dr. Doyle since there is very little chance of a successful outcome. I left the decision up to Warren but, thankfully, he is not really interested in pursuing further chemo in light of the failure of the recommended pancreatic chemo procedure - Gemzar coupled with Tarceva, the oral chemo pill.

There is some good news to report. Dr. Doyle asked Warren about the location of his major source of pain. Warren immediately used his two hands to frame a 4-inch circle in the middle of his upper belly – the location of the pancreas. Dr. Doyle told us that since the major source of pain is concentrated in that single area, he recommends that Warren have a surgical procedure to block the nerve that is relaying the pain. Normaly the surgery could be done on an outpatient basis, but in Warren’s case his rapidly deteriorating condition warrants a hospital stay of three to five days. That would have the added advantage of blood thinner shots being administered by a nurse every twelve hours at least for the time that Warren is hospitalized.

As I wrote in an earlier journal, Dr. Doyle was concerned about the blood clots in Warren’s legs, which were brought to his attention by the radiologists. At first, Dr. Doyle recommended the filter because Warren’s status as a fall risk would make the use of blood thinners dangerous for him. For a weakened person on blood thinners, a small bruise can cause fatal internal bleeding. As it turns out, though, Warren also has multiple blood clots surrounding the pancreas and spleen, which wouldn’t be helped by the proposed filter. That brings us back to blood thinners.

The only blood thinner recommended by Dr. Doyle would be a Lovenox injection every 12 hours, which I would be taught to administer. One drawback of Lovenox is the $5,000 per month price tag that comes with the drug. Warren and I would need to shoulder that expense which would not be covered under our current insurance and most likely wouldn’t be covered by Medicare either. There is an oral cumadin pill which is more like $5 per month, but it is very hard to regulate, especially in someone like Warren with compromised health; the danger of death by internal bleeding rises exponentially in that case. There are also many dietary restrictions attached to the cumadin pill that, given Warren’s status as a tube-feeding patient, would be hard to comply with. We didn’t want to make a decision without further information and contemplation.

After our visit with Dr. Doyle a question regarding blood thinners occurred to me and no nurse could answer it, so Dr. Doyle was kind enough to see me again. I left Warren in his wheel chair in the waiting room (which is the arrangement Warren preferred) and went in to talk to Dr. Doyle again in a private room. I asked Dr. Doyle whether the blood thinner would dissolve the clots that are already there or just keep new ones from forming; the answer to that question could have a huge bearing on whether Warren determines that the $5,000 per month expense is justified. Dr. Doyle’s answer had three parts as follows:
  • No, the blood thinner does not dissolve existing clots. All of us form blood clots every day and our bodies work to dissolve them. Someone who is ill, or has decreased blood flow from inactivity or an injury tends to form more blood clots than the body can dissolve naturally. Blood thinners help strictly by limiting the number of new clots that form thus freeing the body to work more efficiently on dissolving the clots that are already there.
  • The treatment of the clots would do nothing to help rid Warren’s body of the cancer which is his major problem and the problem most likely to take his life. Also, one of the already formed yet undissolved blood clots could break loose and cause a problem.
  • Personally, Dr. Doyle would not recommend treatment of the blood clots by Lovenox especially at such great personal expense to us – the clots aren’t Warren’s major problem and the blood thinners carry a very large and real risk of fatal internal bleeding in Warren’s case.

So, in summary, Warren and I are again left with less hope and many things to ponder.

We met with Marnie, the Hospice Social Worker, today. Marnie was amazed at our composure, acceptance, attitude and support network (in large part thanks to you out there).

Our faith and our love are strong and they keep us secure. We are more determined than ever to hold tight to each other and to our family in the time we have left.

We do know that we must seriously sit down and start talking about funeral plans. Warren’s life expectancy has in no way improved from the “six months to a year with chemo” prognosis that he was given in March. With every new blow comes more evidence that this sinister thing we are dealing with isn’t going to go away without a knock down, drag out fight. Right now, the opponent seems to have more strength than Warren, but we resolve to do whatever we can to turn the tide. Many and constant prayers can’t hurt.

Right now, I’m going to go have a bowl of the delicious homemade vegetable-bean soup that my good friend, Berna, brought me last night. In spite of Dr. Doyle’s assurances today that diet has nothing to do with whether Warren will survive, I believe it does have a lot to do with maintaining a healthy body and it can affect a cancer victim, too. From now on, I’m a vegetarian using beans, nuts and other sources for protein and I plan to eat or do nothing that might compromise my health. I must stay healthy to take care of Warren (and Daddy and the cats). God, be my strength!


Food Sound Eng.
Gold Site Supporter
Friday, July 17, 2009 7:24 PM, EDT
Warren & Arnetta Journal
The situation is ironic. Dr. Doyle wanted to put Warren in the hospital on Thursday to get the nerve block done and get him started on the blood thinner for a few days, but on Friday Warren said emphatically, “Not today”. When we left the doctor’s office Warren told me, “The way I see it, I don’t have a whole lot I can enjoy anymore, and I was really looking forward to watching the British Open this weekend.” Sadly, the morphine Warren is taking for the pain has caused him to sleep through most of the first and second rounds. Since there isn’t enough space to record the rest, he may miss most of Saturday and Sunday, too.

Since the morphine really knocks Warren out, he decided he would have me give him half doses from this point on. We’ll see if it makes any difference and lets him be awake and pain free enough to watch the Open for the rest of the weekend.

Things are falling into place today. This morning I called Adaptive Environments about the stair lift (mistakenly called “chair lift” in previous journals). Adaptive did the stair lift for my parents’ apartment in 1995 and we were very happy with their service. I was happy to hear that the man who serviced us in 1995, Mark Bosley, still owns the company.

I met with the Adaptive field rep, Derrick, this afternoon. The stair lift is still affordable at $3,900 installed – a whole lot cheaper than somehow putting in a full bath on the main floor! Derrick says he has a "like new" previously installed unit (only used three months) that he can sell to me for an even $3,000. Unfortunately, we will need a hinging rail so the rail won’t block the doorway into the living room when not in use. So, if the used chair is adaptable to the automatic hinge, the savings will be offset by the expense of the hinge feature. If we must buy the chair part new to work with the auto hinge we will, of course, pay more.

Whatever we must pay for the stair lift, it's worth every penny to me if Warren can continue to get up the stairs every night to our beloved waterbed. One of the results I noticed in Warren’s pathology report is “Degenerative changes are present within the spine.” It didn’t mention cancer there – I’m assuming it’s arthritis. That is most likely why Warren finds gurneys and hospital beds excruciatingly painful after a while and yearns for our waterbed when he must be away from it. He’s definitely not looking forward to the hospitalization for the nerve block.

Regarding the surgery, I received a phone update from Dr. Doyle’s nurse, Janice, this afternoon. Warren is being admitted to Henry Ford Downtown on Monday for the nerve block procedure and extended observation. Janice says we will most likely get an oncology room so Warren and I plan to make it a mini-vacation of sorts. The oncology rooms have a small kitchenette, table and chairs for two and a lounge chair that extends to make a single bed for a guest – that would be me. My plan is to make sure that Dad and the cats are all set and looked after, then pack to stay with Warren for at least a couple nights. I’ll pack my laptop (there is also wireless access) and stuff to do. We can watch some movies on TV, too. I hope having me there with him will make it a more pleasant experience for Warren.

Most of all, we are hoping and praying that the nerve block procedure is successful. If it works, Warren will have no more need for the morphine that makes him sleep all day and all night. Then maybe our family can better enjoy whatever time we still have together.

Fisher's Mom

Mother Superior
Super Site Supporter
I'm posting Arnetta's updates for Dan while he is out of town.

Saturday, July 18, 2009 8:54 PM, EDT

Warren & Arnetta Journal

The shock our family feels from all the recent bad news is starting to sink in. It's also starting to sink in that the fight may be going out of Warren – he is so very weak and uncommunicative right now. I am hopeful though, that he will get some strength, fight and determination back. He did tell me last night, just before falling asleep, that he would do the Rife Cancer treatment today AND he did follow through without me having to "nag" him. I pray that continues. The family is counting on me to see the Rife through; but, how can I possibly nag someone who is so sick, even if it's possibly for his own good? If nothing works to cure Warren, I don't want the memories of our last days together to be of his frustration with me for pressuring him to do what he doesn’t want to do or feels unable to do.

Right how I'm pinning VERY high hopes on this nerve block procedure. If, after the surgery, Warren doesn't have terrible pain necessitating the morphine that knocks him out so completely, we might yet be able to have some quality family time together.

It has been a VERY busy day today; so much so that I find I have very little time to journal. I’m hoping to have lots of time to write next week so now I’m just making notes. I have some research to do, too! Today I got an exciting Lansing State Journal article in the mail from Eric, a friend who lives in Okemos. A Lansing man evidently cured Stage 4 pancreatic cancer with Gerson Therapy (see

Just like Warren, the cancer patient in the article, (Richard) Shaye Ramont, who had survived two other cancers, was told his newest cancer was inoperable and terminal and that he had six months to live. That was in November of 2006. Ramont started the Gerson Therapy in December, 2006 and ceased his chemo treatments shortly thereafter. Eight months after starting the Gerson Therapy, Richard Shaye Ramont was pronounced cancer free by the Karmanos Cancer Center at the University of Michigan and that should be verifiable!

The article says that Dr. Anthony Meier, Ramont's family physician and medical director for the Sparrow Hospital Bariatric Surgery Department, said Shaye is “a great example of how one’s faith, along with science, can work to obtain healing that most doctors didn’t think was possible…..I supported him in his decision to go with the Gerson Therapy. I couldn’t find anything wrong with it in terms of the concept. I didn’t have scientific data to support it, but what I read was encouraging. This was a very holistic approach and I told Shaye I was willing to work with him if that’s what he wanted to do. He accepted the wisdom of the oncologists and brought his faith into the center of it, turning it over to God.”

Thanks to Eric, I have the patient’s name, address and phone number and I hope he will talk to me! The article says he counsels cancer patients and I’m still in search of that miracle! I know that all of you are praying for one, too. Like Eric, I pray we aren’t too late!

Fisher's Mom

Mother Superior
Super Site Supporter
Sunday, July 19, 2009 5:50 PM, EDT
Warren & Arnetta Journal
This is a real "quickie"!

arren's weight was down to 137.1 this morning. That's probably due to the fact that he has missed three feedings in the past three days. His system has been very sluggish - maybe because he sleeps almost all the time. There were also lots of interruptions in our schedule that interferred with the timing of his feedings and meds.

I sure hope we can get rid of most of the morphine after the pain block. Warren is on a low dose to begin with and he only takes half of the doses he is allowed, if that, but he sleeps around the clock.

Warren says he had a very bad day yesterday and the memories from it during the night disturbed his sleep. I know he did do a lot of talking in his sleep last night. I'm not wearing ear plugs now so that I can hear him when he is up and give him some morphine if he needs it. One night he went the whole night without morphine and woke up in terrible pain. It took him a long time to feel better (if he ever did) and I don't want that to happen again.

The reason for Warren's bad day is partly due to the Rife. He says the pancreas area hurts really bad after the program. Th
at worries me but he thinks that's a good sign - that it is working. He says it's not much worse than the chemo and he is determined to follow through with it.

I was anxious to share the Lansing State Journal article with Warren yesterday but he didn't want to hear it during the short time he was awake and he has slept all day today.

I have been VERY busy all day today preparing for our stay in the hospital. Warren says he wants me there for the whole time so there is a lot I need to do and think about including getting all our new insurance papers filled out and ready for Celeste to pick up tomorrow morning and take to Dale so we can get the coverage started with no gap.

I believe that Henry Ford downtown has some wireless hookups in the oncology area but I can't swear to that. At West Bloomfield they are in EVERY room so I'm spoiled. Anyway, you may not be getting updates directly from me during the coming week. I have gone to "Plan B" (there's that term again) and given my neighbor (and house, cat and Pappa sitter) my password to alert all of you if there is something that needs to be passed on.

I still have a lot to do so I need to close this now and get back to work. I just wanted to quickly update all of you and warn you of my possible absence. I'm taking my laptop so I will be writing while I am there but whether anything gets posted is uncertain.

lease wish us luck and say a prayer that the pain block works!

Fisher's Mom

Mother Superior
Super Site Supporter
Monday, July 20, 2009 5:50 PM, EDT
Warren & Arnetta Journal

We are still home as of now. I called Dr. Doyle's nurse at 11am to see if I could go ahead and give Warren his feeding which should have been given by 10:30am. He was up 3/10s of a pound to 137.4 pounds this morning after getting all feedings in yesterday, so we would like to keep that ball rolling.

ice told me that they do have a room for Warren but they won't be doing the procedure today - just preliminary tests - so I should go ahead and feed him. That's happening as I write.

Okay, Shari just called - we have a private suite on the Oncology floor and it's ready for us as soon as we get there! I told her we would arrive before 3pm. I've got a load of yucky care towels (from feedings) I just put in and I'd like to have my lunch then pack the car. We are pretty well ready.

Here we go - wish us luck! Lots of prayers are welcomed!


Food Sound Eng.
Gold Site Supporter
Wednesday, July 22, 2009 12:56 PM, CDT
Warren & Arnetta Journal

I know that you are all waiting for a good word regarding the pain block procedure that had us all holding our hopes so high. Unfortunately, no procedure was done and we are back home now trying to recover from yet another nightmare worse than the last.
The short story is as follows: Monday afternoon we arrived at Henry Ford Downtown and were soon visited by many “teams” of doctors from many disciplines. All of them seemingly wanted a say in what studies should and would be done to determine which method, out of what we understand to be at least two choices, would be used to do the procedure .
First the gastroenterologist team was slated to do the procedure on Monday by putting a tube down Warren’s throat to reach the nerve area. But, it took the gastroenterologists until Tuesday evening at 5pm to determine that the procedure was too dangerous for them to do. Their fear was that due to Warren’s breathing difficulties, the tube could cause him to quit breathing and he would then need to be put on a respirator.
Warren’s case was passed off to radiology/anesthesia next – evidently too late for it to be scheduled until sometime late this (Wednesday) afternoon, IF THEN.
Meanwhile Warren was getting weaker and weaker. All this indecision and delay had necessitated orders for nothing by mouth or tube for all but 8 hours of our entire time there. Consequently, we only managed to get in two tube feedings. That’s just one of the many problems we encountered but I’m saving the rest for the “long story”.
As you may have already guessed, the road to get the job done at Henry Ford often had the earmarks of another “Keystone Cop” Routine that rivals or even surpasses the two emergency room episodes previously related. We found out yet again that “the hospital is no place for sick people” and we couldn’t wait to get back home to our own routine and Hospice.
The current episode in Warren's saga may need to be done in chapters. The first chapter is nearly completed because I started writing from my notes in the hospital yesterday. I’m much too tired to go on right now, though. Neither Warren nor I slept well for the past two nights or days.
We got home as of 10am this morning and are both trying to recover from the three-day ordeal that has so little to show for it. Warren is too weak to even remove the cap from a bottle of antacids so the first thing I did was to feed him. We are sure that it will take him at least a week to get back to where he was before this latest caper but we pray that God grants him a swifter recovery than we expect.

Warren and I think we would like to get the nerve block done provided that the pain is still centralized by the time Warren recovers from this fumbled attempt. I feel, however, that Warren made the right decision to come home today. He was absolutely too weak and too emotionally spent to go through another day of miscommunication, non-communication, doubletalk, insufficient meds and, most of all, no feedings followed by a surgical procedure!

We will keep all of you posted as time goes on. Thank you so much for your love and prayers!


Tortes Are Us
Super Site Supporter
Get some rest sweetie pie. Tomorrow is another day. As for my love and prayers, you have had them for some time. Dealing and coping with health issues are some of the most stressful issues ever. Be sure to take care of you, too!


New member

I know so well what you are going through. One step forward, two steps back. It's so frustrating that I kick the walls..........often. My mantra is "With God, all things are possible". I cry with you. :heart:


Food Sound Eng.
Gold Site Supporter
Thursday, July 23, 2009 10:23 PM, EDT
Arnetta & Warren Journal.

What a difference a day makes! After what we have been through earlier this week, this day was a miracle!

Warren was still a bit disoriented this morning after his mind-bending experience of the past three days. He was wide-awake at 4:56am. When I stirred to get up and visit the lavatory Warren said, “Guess it’s time for my Ensure; time to get up”. I looked at the clock and said,” Not quite, it’s only 4:56”. His reply was, “That clock has said the same thing for the last five hours”. I reminded him that it was still dark out, but I said I’d go check another clock just to be sure. The other clock confirmed the correct time – now 4:58. Warren then told me to go back to sleep, which I did, but he says he just sat there with his eyes open for the next 3 ½ hours. He has been comparatively awake and cognizant today, so I hope he will be ready for a full night’s sleep tonight! I liked our old schedule that gave me time to feed the cats, have my cup of coffee, and “get my bearings” for the day before my nursing shift begins.

Warren has had no morphine since very early on Wednesday morning and his pain is tolerable (mostly 3-5 out of 10). We think his bowel activity has a lot to do with it again. He hadn’t had a bowel movement for many days when we entered the hospital and his pain was increasing with every passing day. But Tuesday night the nurse gave him a Fleets Enema which he managed to hold in for at least a half hour. Warren was only mildly successful at elimination on Tuesday night but we think the Fleets kept working. At home on Wednesday evening, he had a very large elimination. And if the one on Wednesday evening was very large, the one this morning was nothing less than HUMUNGUS! And he just had another medium sized one this evening. Warren’s pain has been at about 3 and tolerable all day with NO morphine or any other pain reliever. He has also been awake quite a bit today so we have been able to talk.

Last night, I realized that there was a lot of truth to what Warren said in the hospital about me not giving him enough credit for being able to make any decisions. I initiated a discussion about it today and we were able to talk about it.

First I confessed he had a point and I apologized. As I told Warren, there have been many times when he was so sick, or tired, or spaced out on meds that, in all honesty, he wasn't capable of making decisions and/or didn't want to. He had to agree that was true. In fact, as of late, those times have happened fairly frequently. Consequently, I became in the habit of deciding things on my own that affect both of us even when discussion would have been possible. From now on, unless it is absolutely impossible to do so, I have agreed to solicit Warren's opinion on any changes to be made.

As a preamble to today's discussion, I tested the theory last night by consulting with Warren about plans for his downstairs room. We have dismissed the stair lift idea since cousin Julee brought up her brilliant suggestion to make Warren a first floor bedroom and use Dad’s stair lift to get him upstairs to Dad’s handicap equipped bathroom for his biweekly shower. Dad is excited to be able to help. In fact, he spent the day cleaning his bathroom in preparation for Warren’s use.

Our first idea was to get Warren a hospital bed and put it in the sunroom where he loves to be, but all along I have been a bit uncomfortable with making the sunroom into the place where Warren stays 24/7. As long as he is well enough to be transported by wheel chair to his spot on the recliner, he can spend the days comfortably in there just as it is. Furthermore, I'm hoping that we won't always be recluses and may want a little social life with family and friends. I'm hoping, too, that Warren will still be with us for Justin and Kate's wedding. During the wedding party, as well as when the family comes from Lansing for a visit, Warren may need a first floor place where he can go to have privacy and quiet so he can relax or take a nap.

The office would be the ideal place for Warren’s first floor room. It really is very separated from the area in which we live. It has lots of window space to enjoy looking out and blinds to close out the outside when it's time to sleep. It's also small enough to easily heat and cool as necessary, whereas I could see temperature regulation being a HUGE problem in the sunroom especially on cold winter nights. In short, the office is the room that can be made into the ideal first floor bedroom with the least amount of day-to-day disruption in what we hope to be our daily life for months to come.

I was also looking forward to having the office as a place to handle household accounting, etc. It would allow me to keep our kitchen table relatively clear of the things I need to do in that regard. It dawns on me now that I could possibly have BOTH. If we keep the desk portion of the Sauder set that is in there now for me to work on but get rid of the peninsula portion, and take out the client chairs, there would be room for Warren's bed in the room. The oak cabinet on the west side of the door can be moved next to the bed to serve as a bedside table for Warren. With that file cabinet moved, the office armoire that is now in the sunroom with all my "stuff" could be cleaned out and moved to the wall next to the desk where it is handy for me and there would be room in it for some of Warren’s things too. Warren's computer can stay where it is.

Warren agreed with everything I proposed and is very anxious to get it set up to make his life easier. That trek up the stairs is getting VERY tough each night.

I talked to Hospice tonight and they plan to deliver the hospital airbed between six and eight tomorrow evening. Warren and I have agreed that if the hospital airbed is not comfortable enough for him, we will purchase a twin size water bed like we have upstairs for the new room.

Originally, I had asked for the air bed from Hospice sometime next week to give us enough time, but when I e-mailed Dale and Celeste about my plan they called immediately and said they are both coming over tomorrow to make sure this happens by tomorrow night. They have already been here for hours cleaning many boxes of files and other accumulation out of the room while Warren and I were in the hospital. Now they say they will work as long as they must to make sure it gets done in time!

Warren is so excited about this – he just can’t get over it, that people would do this for him! I told him that whatever we need to take out of there to make it into his ideal room, we will. He agreed that we could buy a nice sized new TV to put in there. His computer and music stand will definitely stay, too. It will be his own hideaway – what our son and son-in-law call a “Man-Cave”! And tonight, we plan to practice not going upstairs by sleeping in the sunroom – Warren on the long couch and me curled up on the love seat so I’ll be near to help him to the bathroom. He’ll have a commode next to the bed in his “Man Cave”. God is great, life is good and friends are heaven sent!

There will be more about the thwarted nerve block procedure later. It doesn’t seem so urgent for now since the pain is under control, but if Warren does have it done it will be as an outpatient at a facility with which Hospice of Michigan has an agreement – most likely Beaumont in Oakland County.

Speaking of Hospice, I was telling the nurse today about the blood thinner conundrum we find ourselves in and her simple suggestion was wonderful. She agreed that Warren is NOT a suitable candidate for the strong blood thinners. She suggested, instead, that I give Warren a baby aspirin every day just like I myself take for a prolapsed mitral valve. The aspirin can even be crushed and put into his tube with his feeding. Wow! Simple! And it doesn’t cost $3,600 to $5,000 per month for an imperfect solution to a secondary problem.

Hospice is wonderful!

Below is the first installment of our three day horror story, “Hospitals Aren't for Sick People" starting with Monday. Tuesday will be the climax and Wednesday the final chapter. Please tune in for more episodes and more developments………………………

The Story:

Monday morning I waited for a call from Henry Ford until 11am. Finally, I called them because it was already one-half hour past time for Warren’s first tube feeding of the day. I had given Warren his morning Ensure Plus but I was afraid to give him anything after that – you know how those procedure preps gurus can be about having something on the stomach. It’s usually against the rules. Dr. Doyle’s nurse, Janice, had told me to give her a call if I hadn’t heard anything before noon and she would “rattle some cages”. I figured it was high time for the rattling to begin!

Janice was sure the procedure wouldn’t be done any time on Monday so she instructed me to go ahead and feed Warren saying, “By all means, don’t starve your husband”! I, of course, dutifully obeyed and set up his tube feeding. Little did I know that would be the last nourishment Warren would have for more than 24 hours, with NOTHING significant happening in between.

Within a very few minutes of beginning the feeding – sometime after noon - I got a call from someone to tell me that our room had been made ready for us and we should come in as soon as we could get there. Warren was feeding and I had thrown in a load of towels which were messed up from previous tube feedings, so I told the caller we could probably get down there by 3:00. She seemed satisfied by that so I went about my business loading the car with the walker, our clothing, meds and entertainment for the next three to five days including both of our packed up laptop computers: Warren had dreams of playing his Links golf games after the procedure rendered him relatively pain free so he wanted his laptop, too.

It was when I was passing the laundry room with a load to take to the car that I heard the unmistakable sound of rinse water in overflowing abundance hitting the tile floor. I knew then that something had fallen into the laundry tub drain causing it to get clogged and overflow. I dreaded what I would find when I looked around the corner. The problem was even worse than I had imagined. The carpet runner in front of the two covered litter boxes was entirely soaked and the open litter box under the laundry tub was totally flooded. I had to deal with the mess before we could leave for the hospital.

When the load of towels plus a few filler items was done, I transferred them to the drier. Meanwhile I pulled up the soaked rug, put it in the laundry tub to drain. Then I emptied the water soaked litter into an empty litter pail and refilled the litter box with clean granulated clay. The floor was soaked with clay litter run over so I gave that a quick scrub and found some old scatter rugs to put down while I put the wet runner and the cleaning rags in the washer to run through. By this time it was 2:30 – high time to be on the road.

I went upstairs to go to the bathroom, got Warren ready with shoes on, etc. and transferred him to his portable oxygen for the ride downtown. By 2:45 we were underway. By 3:05 we were about to enter the Lodge Freeway and I happened to touch my pocket where my cell phone SHOULD be. I checked all my pockets plus the cell phone pouch on my purse where I generally just keep the spare batteries. I determined that I must have left my phone by my computer where I had last answered it, so I turned around to go back home. I knew that cell phone would be my link to the outside world for three to five days and I needed to have it!

The cell phone wasn’t by my computer so I called the number from our home line and followed the ring up the stairs to our master bedroom bath where I had used the commode before leaving the house. There was the phone on the rug where it had evidently landed when it fell out of the shallow pocket in my cutoffs. I put it in the buttoned pocket on the thigh this time and we were off again.

We made it downtown by 3:58 – a miracle to be sure – and headed straight for our room. The room was disappointingly small – very unlike the bone marrow oncology room we were in before, but it did have the great chair-to lounge-to single bed I wanted for me so I was okay with it.

Soon a nurse came in and said, “We’ve been waiting ALL DAY for you to get here. You must live very far away.” I muttered something about not being informed that we had a room until after noon at which time I had gotten into some uninterruptible activities and let it go at that. In retrospect, that nurse’s comment should have been my first hint that communication at Henry Ford hadn’t improved very much.

The first thing we were told was that there would be a “swallow study” since Warren’s records show that he is having difficulty swallowing. I asked about feeding since Warren had only had one so far. I was told that we couldn’t feed Warren on Monday because of the swallow study to be done soon. They would be feeding him things at that time to test his ability to swallow. We told them about the Viokase we would need for that unless they would allow us to use our own meds which hadn’t met the usual requirement of being “checked by the pharmacy”. In fact, Warren’s meds never were checked the whole time we were there.

Monday evening passed - no swallow study was done and there were still no answers as to when the procedure would be done so Warren still wasn’t allowed to have any food that day.


Food Sound Eng.
Gold Site Supporter
Friday, July 24, 2009 10:14 PM, EDT
Warren & Arnetta Journal

This will be a quick note since I am totally exhausted and hope to get to bed soon. I'm running on a large sleep deficit and I'm really feeling it tonight after working so hard today.

I had little sleep Monday or Tuesday nights at the hospital. Last night Warren was restless all night and I guess I was too. Sleeping on the loveseat in the sun room is great for a nap but I've found it's not comfortable enough for a good night's sleep.

I was excited, too, about the task ahead - making a room on the first floor for Warren. I got up and started cleaning out the desk that Warren and I had decided to pitch. I knew there was a chance I might find some money in one of the cubbyholes in it because Warren always stashed his bowling winnings there. My two hours of work from 2 to 4am was rewarded by finding a crisp new $100 bill that had gotten shoved to the back of the cupboard in an old envelope. It could so easily have gotten pitched by mistake or put in a box with old papers to be shredded!

I had just come back to the sunroom and gotten back to sleep when Warren woke up raring to go at about 4:30am. He doesn't need as much sleep without the morphine and his internal clock is all topsy turvey. He says he thinks he'll do better tonight. I sure hope so. I don't think I'll do very well tomorrow if I don't get enough sleep again tonight!

Basically, I want to let all of you know that Dale and Celeste came over as planned today and we got the job done! I helped as much as I could while I wasn't caring for Warren but the two of them did a wonderful job of filling all the boxes I could find and getting them out of the office. Then we got that ton of lead Sauder wood monstrous desk and peninsula out of the office and into the garage to be gotten out to the curb for Monday's trash pickup.

After all the moving was done, Dale left and Celeste and I cleaned. Celeste brought her carpet steamer and she ran that while I did some "stuff" organization and traced and bundled electronics wires to get them off the floor. When Celeste had finished, we were all amazed at how great that 35 year old red sculptured carpet cleaned up. Unfortunately, that red carpet may NEVER wear out! That was the deal - when it wore out we would replace it. Actually, we do have parquet tile for that room but no time to put it down this time.

Well, the three of us - Dale, Celeste and me - made it before the airbed arrived! Warren is really looking forward to trying out the new arrangement. I'll let you know how it goes tomorrow. Hopefully, I'll also have time to finish installment two of "The Hospital Is No Place for Sick People".

Warren is still extremely weak and shaky from the hospital ordeal but he is also still without sufficient pain to warrant using morphine. Another huge bowel movement tonight leaves no doubt in my mind that being overstuffed was at the root of his increasing pain - at least for now.

Thanks to everyone, for everything. To our amazement, the cards, notes and letters continue to pour in with astounding regularity. I'm going to figure out how to make a display of them in Warren's new room now that we can find the walls, floor and cieling


Food Sound Eng.
Gold Site Supporter
Saturday, July 25, 2009 9:12 PM, EDT
Warren & Arnetta

I’m sorry to say that not all of today’s news is good news. However, that’s not entirely unexpected given Warren’s frequent episodes of confusion recently.

Warren’s new main floor bedroom worked well last night. We only needed to make a slight adjustment for comfort before he goes to bed again. Sometime during the night last night, Warren decided that his head felt too high and he didn’t know how to change it. Also, with the thick air mattress on the bed, having the head high cut down significantly on the lower mattress length that Warren needs for his long legs so he felt scrunched. Just lowering the head of the bed helps considerably. I corrected those things and he tried laying in it again. He says it is wonderful now!

Warren didn’t use the commode last night because it is WAY too short. I thought something looked strange about it – it’s the commode left over from Mom’s convalescence that Dad cut the legs off of to fit in the back of the Windstar as an emergency facility for our 2005 road trip to KC. The Hospice nurse laughed when I called to order another commode and told her about my discovery regarding the height of the one we already have. She said, “In other words, you have a pediatric commode.” Tonight Warren has a full sized one. You all can let me know if any of you need a potty chair!

I had a very good night last night, thank goodness. Warren was in bed by 10:30 as per his wishes and I headed off, monitor in hand, for our upstairs bedroom. I really must have been in a fog because I don’t clearly remember the process of getting ready for bed. I just remember sinking gratefully into the sheets and not waking up until 6:30 am!

When I came down this morning, I was surprised to find Warren already in the sunroom with his walker. He seemed still very confused about the clock and time just as he has been for the past few days. He is having a difficult time interpreting what he sees on the face of a clock or what he reads on a digital clock in respect to how it relates to an acceptable schedule for him.

Warren asked me again what time he is supposed to get up. I told him again, as I’ve told him many times, that there is no set time for him to get up but I would prefer it to be 6:30am or later. His sleep schedule seems to be changing and I assured him that we would just try to adjust to it. However, as long as he is able and willing, if he can allow me to get the sleepers out of my eyes and “pour myself a cup of ambition” (coffee) to help me get moving, that would be appreciated. In any case, we will invent a new schedule tailored to what is comfortable for him and, hopefully, it will be for me, too!

Then Warren started asking many strange questions. He wondered where the bathroom is on this floor and how many bathrooms there are. He thought there were two lavatories so I figured maybe he was just confused by the “pediatric commode”. But his confusion continued. At one point, Warren seemed upset about something so I asked him what was wrong. He said he just couldn’t find what he was looking for. When I asked what that something was, he said the “screen door instructions that tell me what squares to put where.” Actually, I think that might have had something to do with his Sudoku book. A while later Warren complained that the paper cups are so flimsy and keep disappearing. He also told me he was “trying to put away the drops of soup because you might want me to have them later.” The confusion continued all morning. Warren talked to people who weren’t there, then realized that there was no reason for them to be there. It’s like he was drifting between reality and somewhere else. He once called me in so he could hand me something invisible to take care of, and also showed me that he was putting something in a medicine cup – a cup that he saw and I didn’t.

There had been small incidents of confusion since we came home from the hospital but this was the worst and most continuous episode yet. Since it had been more than three full days since Warren had had any narcotics or pain relievers of ANY kind, I became very concerned. It seemed to me that the confusion should be getting better, not worse, so I called the 24/7 Hospice nurse line and talked to Sherry. Sherry confirmed that the narcotics should, by now, be out of Warren’s system.

Sherry’s initial theory, and also the first thought of Warren’s assigned Hospice nurse, Mary, who came this afternoon, is that the cancer has spread yet again – this time to Warren’s brain. I remember that metastasis to the brain is what the doctors were checking for when Warren had the word salad episodes, so the thought had occurred to me as well. That time I knew he still had Oxycodone in his system but the morphine he had been using this time doesn’t last as long.

While Mary was here this afternoon, Warren was pretty lucid and able to communicate effectively with her. When Mary was leaving I asked her if this morning’s confusion really could still be effects from the morphine although Warren hasn’t had any pain meds since the small dose at 2am Wednesday morning. She said it’s possible if his kidneys and liver aren’t functioning well enough to help his body get rid of it, especially the IV version that the hospital was giving him. I was encouraged by Warren’s normal behavior while Mary was here and hoped that might mean that his brain is still cancer free.

Shortly after Mary left, though, Warren started talking to himself and then to me about his confusion with how to read digital clocks. He asked me if when the clock says 40 that means it’s 8am because, he says, he is supposed to get up at 8am. Warren told me that the digital clock I put in his room has all kinds of crazy numbers on it throughout the night, but every time I look at the clock it says the right time. Warren wants to see the instruction book for it but I can’t find it. It’s just a simple Timex clock radio so I suppose I could look it up on line but it may take a while. Of course, I’m humoring Warren and telling him that we will need to check that clock out and, meanwhile, maybe I can find another clock with a lighted face that he can read at night.

So far tonight, Warren seems okay again except for the problems with reading the clock.

If the confusion continues, future Hospice treatment may reflect the organization’s belief that we could now be dealing with brain involvement. Sherry explained to me that as the symptoms get worse, if they do, Hospice will be able to give Warren things that will relieve some of the pressure from the fluid build up in his brain caused by the cancer. It is unclear to me at this point if Hospice would test Warren or just work under the assumption that the dementia is cancer related. I would hope that they would be able to support the theory through a test. I’m wondering, also, if it’s a possibility that if there is some cancer activity in the brain now, it could be affecting Warren’s perception of pain. Maybe that is why he has been pain free enough to not need pain meds. I’d like to get some answers to my questions so if Warren’s confusion doesn’t clear up, I will be calling the Hospice line again soon.

Hospice Nurse Sherry and I had a talk about what I had done with Warren so far to handle this morning’s specific incidents of confusion; Sherry was impressed with my aptitude for handling dementia so I told her that I had had a lot of practice. I am glad, now, that I am used to dealing with Alzheimer’s symptoms. I’ll never be glad for how I got the practice (through family members) but at least I have a good idea of how best to handle the dementia patient.

I also talked to Sherry about my necessarily gentle and unsuccessful attempts to convince Warren to at least look into alternative treatments to beat this cancer. He has not been interested in even hearing about any new treatments since chemo ended, nor has he been willing to get back to the Rife treatments in which our family placed some hope for comfort if not recovery. All these alternatives seem complicated and futile to Warren now and any talk of pursuing something new just serves to upset and agitate him.

Without being prompted to, Sherry confirmed the feeling that has been growing in me; so, for what it’s worth, I hereby pass it on to all of you. Sherry said, “This disease affects all of you, especially your family, BUT it is Warren’s disease and no matter how difficult it is for everyone to accept, we must all respect Warren’s wishes when it comes to when or how to treat his cancer.” I must admit, that is very hard for me to do but I’m trying my best. So many of you have been kind enough to send me treatment ideas that you know work because you know someone who is walking around that shouldn’t be according to doctors. That possibility excites me but I fear that Warren isn’t up to a fight anymore.

To help my acceptance of the situation, my mind goes back to my March discussion with Dr. Levin. At that time, Dr. Levin told me (in a few different ways) that Warren had a devastating degree of cancer for the short time his symptoms had escalated and evolved into something that couldn’t be handled without medical intervention. Dr. Levin assured me back then that he seldom sees such an aggressive cancer in any patient. In fact, Dr. Levin said he had never seen a cancer this aggressive in a man of Warren’s relatively young age and prior excellent physical condition. When I remember all that, I also realize that there may have been no treatment we could have done that would have been enough.

So, through my tears, I turned to God to pray, “Please God, if Warren must go so soon and if the cancer has gone to his brain, take him quickly to spare him the indignity of losing his mind along with his physical health. Take away Warren’s fears, and help all of us to bear the feelings of grief that will surely follow Warren’s passing into your loving arms. Amen”


Food Sound Eng.
Gold Site Supporter
Sunday, July 26, 2009 7:47 PM, CDT
Arnetta & Warren Journal

Warren was coherent most of the day today - from late this morning to late evening. I hope that is a good sign.

All night last night, though, it sounded like there was a party going on in Warren's room and he was the life of the party, touching base with everyone there. I think the guests were his bowling team buddies, the Booze Brothers, because I caught a couple of their names over my monitor. I really couldn't make out what Warren was saying though.

At 4:30am I finally gave up trying to sleep and came down to start rearranging the sunroom for better wheelchair access to Warren's favorite chair. I accomplished my aim before he woke up for the day so I told him I was going to have a surprise for him.

When Warren saw what I had done, he was very appreciative! Now he can get up from his recliner and immediately sit in the wheel chair or walker instead of needing my help to walk the few feet to the end of the couch. He is so unsteady on his feet now that both of us feared he would fall. In fact, he did fall today but fortunately he landed back down on the couch. His left foot is entirely void of sensation so between that and his extreme weakness, Warren really struggles to walk any at all.

This morning Warren wanted to stay in bed until around 11am. Dad and I listened while Warren babbled on incoherently all that time, but, unlike yesterday morning, after Warren woke up he made sense. I notice his voice is different - a little more slurred than usual.

I'm still not sure what all this means. I know, as some of you have mentioned, that infection in the elderly or seriously ill can cause confusion, but there is no sign that Warren has any infection.

I'm thinking an infection probably wouldn't explain the pain being so much better but Warren's lack of constipation might be an answer there. I am keeping an open mind, so I will watch for any signs that this dementia is from some other cause. However, the anesthetic effect of the brain cancer described by a few of you in guestbook comments and in e-mails almost makes me hope it is that so Warren won't need to suffer so much in the end.

My friend Jean wrote, "I think your Hospice nurses may be right that the cancer has gone to the brain. Many of the symptoms you've described are exactly what happened to my mom. (Her breast cancer had spread to her brain.) The blessing was, as you described, no apparent pain. Medical staff were amazed that my mom showed no signs of being in pain. She never needed pain medicine for the several weeks at the end."

Warren is also much better in the afternoon - coherent for the most part from around noontime to late evening. Wouldn't infection cause a more continual problem?

Warren's hours are turned around, too - like in Sundowners. Since I couldn't sleep last night hearing him babble over the monitor, I am going to turn it down just a tad tonight. I have found that when he actually wants me, he calls my name fairly loudly, so I will know when he actually needs me. I know I need my rest tonight!

Today was shower day and Warren and I were very apprehensive about our first time going up the stair lift to Dad's handicapped bathroom. Actually, that part was pretty easy. The bath turned out to be much more difficult. I was skeptical but Warren was sure that he could get down in the tub to relax and soak - big mistake! It was hard enough for him to get down but it was near impossible to get up. I wasn't strong enough to pull him to his feet and he wasn't strong enough to use the grab bars to do so. I told him we would need to call Hospice or hope that Jay arrived soon to help him up. He struggled for a long time before he managed to roll a little and, with agonized determination, managed to get to his knees so he could use his arms to push himself up and sit on the transfer bench. NO MORE Tub Baths!