Cancer Cachexia

Arnetta & Warren Journal
Friday, May 22, 2009 5:55 PM, EDT


We just got home from chemo and I immediately set up Warren's afternoon feeding so he will be ready to eat some good food for dinner. He chooses to have another of Helga’s stuffed shells – hopefully two - tonight, so I took two more shells out and froze the rest. The extraction of two shells evened up the pan and left just the right amount for Sunday when Justin (Jay) and Kate will be here to share them with us. As my dinner tonight, I will enjoy a salad and some of the delicious meatloaf that our friends Pat and Bob brought yesterday.

Caryn and Tim are working on their house this weekend. I'm sure they are motivated, at least in part, by the approaching trek of the German Golisches from North Carolina to Michigan. Caryn stripped kitchen wallpaper and painted the walls in light neutral colors. She will probably do some stenciling at a later date, but for now, she says the kitchen looks much bigger and brighter so she is happy with it as is. Caryn and Tim will also rip up the carpet in the main floor lavatory and lay the Pergo type flooring that they purchased for there a while back. Tim plans on making a double batch of beer, too. I would bet that at least one of the two batches will be a German type brew!

Warren feels fine (relative word, of course) after the chemo and I'm supposing that we will watch most, if not all, of the Wings game tonight. GO WINGS!

Warren is trying to walk more to build up the strength in his legs again but just a few steps really gets him out of breath. I hope that will change as he gains more strength through good nutrition!

Warren’s pre-chemo blood work was pretty satisfactory except for the hemoglobin, which was low at 9.4. Ideally, it should be 13.5 to 17. That’s no doubt why he is still so tired and out of breath with minimal exertion. With the nurse’s blessing, I will give him a time-release iron pill with Vitamin C at least every other day. Then we will need to combat the constipation, which will no doubt result from the iron pills, with extra magnesium and B6, stool softeners and occasionally Miralax, too.

Our machine came today so we will probably spend a lot of the weekend figuring out how to use it. It comes preprogrammed with all Dr. New’s treatments but right now it’s in pieces that need to be put together and set up. We may work on that during the game this evening.


The weather will be great this weekend so I'm hoping to spend some time enjoying our deck in the sunshine.

Have a great evening, weekend and Holiday everyone! Let’s all remember to say some prayers for our troops – past and present!
 
Arnetta & Warren Journel.
Saturday, May 23, 2009 7:25 PM, EDT

The Big News today - after three days of being stuck at 138 pounds, Warren was up another ½ pound to 138.5! Slowly but surely, we are closing in on the 140 goal.

The key to Warren’s weight management is to have a regular feeding schedule. In order to facilitate that, Warren has voluntarily given up lunch. Whenever he tried to squeeze in a small lunch in addition to his favorite meals – breakfast and dinner, it was hard to get two full tube feedings in.

Warren agrees with me that his tube feedings provide the best combination of calories and nutrients so we need to concentrate on them for now. We will use food by mouth only for enjoyment and supplementation. We can flip those priorities as he gets stronger and closer to a desirable weight.

Until that time comes, Warren has breakfast at around 8:30 or 9, depending on his shower schedule. Then between 10 and 11am, depending on the test results for residual; he has his first 2.5 cans of formula through the tube. Between 2:30 and 3, he has another 2.5 cans of formula by tube. As it turns out the tube feeding times usually coincide with naptime so it works out very well. We wind up the eating schedule with a favorite dinner between 6 and 7pm.

Today was the first day after chemo so Warren was VERY tired all day. His fatigue didn’t keep him from wanting to set up our new machine and try it out though. First we had to listen to the instructional DVD to get a feel for the process. After that we set everything up and ran through the DVD again, following the step-by-step instructions to integrate the machine with Warren’s laptop. Our neighbor, Diana, came over to help us run the DVD. We have never used the DVD player and Warren seemed to be “remote challenged” today. He thinks he had pushed the same buttons Diana pushed but hadn’t gotten the same results.

I must say, it’s great to have a neighbor (and one of my best friends) who is good with “gadgets”. I am not – Warren has always taken care of the electronics in this household. If he isn’t around, I call Diana!

I rearranged the furniture in the sunroom to get the computer and the machine close enough to Warren to run the “Support Program” written especially for him. This was the first of three days of running that particular program before we do the footbath. Warren was anxious to start with that program because we think it is the one that is supposed to help clear the scar tissue in his lungs so that he can breath a bit easier. There are a few other programs written for Warren by our doctor to try, as well as many other programs that are basic for the machine and come on a separate disk. I have a few questions to ask the doctor by e-mail now that we have the apparatus in hand and have used it. I’ll be shooting an e-mail off to her this evening.

I need to get a shower and wash my hair this evening, too; but before that I’ve got a couple dusty jobs to do that I want to be able to wash out of my already dirty hair and not add to the clean kopf (head). So, since I’ve updated all of you, I wish you a good evening and a great Holiday! Stay safe and stay well.



 
Warren & Arnetta's Journal
Monday, May 25, 2009 5:45 PM, EDT



Mid afternoon: Well it sure is a mystery! Wherever the 1 1/2 pounds went, it didn’t stay gone for long. Much to our delight, Warren was back up to 138.5 this morning.

Unfortunately, today we are having difficulty getting the last feeding down Warren. As of 4:10 this afternoon, I still got too much residual from the 10am feeding to feed him again. When I checked the stomach contents through the tube a lot of gas bubbled out and then a whole syringe of food followed with still more to come, so I put it back and closed the tube.

The strange thing is that Warren feels like he could eat something so I’d like to take advantage of that. We didn’t do gas drops earlier, so I gave them to him after the check for residual with hopes of heating a small dinner for him around 5pm. Ideally, we can still get more formula in him without making him uncomfortable before bed.

We count it as a HUGE blessing that Warren continues to be pain free and his color is noticebly improved. His only problems now are pronounced fatigue from chemo, continued weakness in his legs and arms, and difficulty in breathing. I’m anxious for all the holistic products to arrive to see if enhanced nutrition will help.

We haven’t really developed a rhythm with the RIFE programs yet but we are working out a schedule. It’s hard to coordinate the tube feedings and the RIFE – all pretty time consuming things that really can’t be overlapped.

Of course, it also means that I can’t stray far from home for very long. And because of the tube feeding and other scheduled treatments, I can’t ask anyone to come in and sit with Warren while I go out.

I have used the nursery monitor a lot today to keep tabs on Warren while I finished a huge project that I started yesterday. The west wall of our garage is now cleared and organized, making the wheel chair ramp that we had made for Mom in 1995 accessible for Warren. Now I need to figure out how to get enough time away from caring for Warren to get over to Wright Phillipis and order the wheelchair that the new doctor gave us a prescription for. The one we are using is very old and kind of hard to push. It also has no footrests so Warren has to walk his feet along with it while I push him. It’s fine for in the house but not very suitable for longer excursions. I will call Wright Phillipis tomorrow and ask how best to accomplish the task. I am hoping I may be able to fax the RX to them and tell them what I want over the phone, and then just pick it up when they have it ready. I’d like it before Warren’s procedure to install a chemo port on June 1.

Another thing I desperately need is a haircut. I’m pretty good at cutting the sides and crown just the way I like it, but I can’t manage to make the back look decent. I am hoping that one of my friends out there feels confident enough at cutting hair to help me with the back. I’m not too fussy – if you goof, I won’t have to look at it anyway!

Another problem with which I’d like help is Styrofoam. I have bags and bags of it that I can’t bring myself to throw into the landfills.

Shortly before Warren became ill, I had started a Styrofoam recycling program at our church. Every week I collected and brought the Styrofoam cups from fellowship coffee time home, lightly rinsed them and stacked them in bags to be recycled. I had also collected packaging from personal purchases, egg cartons, etc. to take to the center. I figured that when I had a Windstar full, I’d take them to the 24hour drop off at the 20000 W. 8Mile RRASOC location.

All that Styrofoam was on the west garage wall and now it’s all in our Windstar (with some room to spare). I’d love it if someone could drive the Windstar full of Styrofoam to RRASOC for me. If you live in Farmington, Farmington Hills, Novi, South Lyon, Southfield, Walled Lake or Wixom, you are serviced by the aforementioned facility. I’m not sure if they check ID but they might. I thought I might be lucky enough to find one of you who would love to use my car to take a trip down that way any time of night or day and get rid of my Styrofoam the environmentally friendly way. By the way, in case you are curios, the used Styrofoam goes from RRRASOC to Dart Container Corporation to be reused for more Styrofoam containers. For more info, check it out at http://www.rrrasoc.org/southfield.html.

Evening:OKAY! Warren ate his small dinner! I pray he can take a couple cans of formula through the tube at bedtime!

Thanks for checking in! Have a great evening, everyone, and God be with you all!
 
Arnetta & Warren's Journal.
Tuesday, May 26, 2009 7:19 PM, EDT



Wow, this has been a VERY busy and exciting day! Warren is continuing to confound the scale with his weight variations. This morning he weighed 137.75 – down ¾ of a pound. Maybe that’s because we didn’t get the last can of formula in him yesterday. Today we are on track to give him all six cans plus two meals for the first time ever. Our new pattern seems to be working well - just two cans in three separate feedings plus two small meals – breakfast and dinner - between. Warren has always balked at having anything in his stomach before going to bed, but I convinced him to try just one can at bedtime last night and it worked great. Tonight we will give him can number five and six at about 8:30 or 9:00 and go to bed by 10 or 10:30. We hope the extra food shows up on the scale tomorrow!

I was excited this morning when I woke to find answers to ALL of my requests for help. Thanks so much for your responses. Two contacts volunteered to deliver my Styrofoam to RRRASOC. I called the first in line – a couple from church, Reid and Brooke. They really wanted to help, and I figured it was very appropriate to call them since a lot of the Styrofoam was from our church. Thanks so much to them and also to my friend Michaela – the other volunteer. The environment thanks you, too. The Styrofoam is now safely at RRRASOC.

Next, I found out that my very good friend, Celeste, like me, has been cutting her family members’ hair for years and, according to her husband, Dale, has been doing a darn good job of it. Celeste will cut my hair tomorrow after taking Dad to the eye doctor appointment that she scheduled for him. I had to cancel his eye pressure check-up last Thursday because it was the same day as Warren’s recently assigned appointment with Dr. Doyle. Celeste has worked for Dad’s eye doctor, Dr. Burke, occasionally so it’s very convenient to have her help me out with that.

Finally, the Wright Fillipis questions were answered by my nurse friend Gwen. She told me that they have delivered to her in the fairly recent past. I called the Twelve Mile and Middlebelt branch and faxed the prescriptions for the wheelchair and the tub grab bar to them. The wheel chair will be delivered from a separate place. Wright Fillipis is mailing me the suction cup grab bar for the tub. We have ceramic tile and I'm not sure where we want the bar so we will be experimenting with the best placement. Our friend Frank offered to help if I have any problems with the grab bar or any other handicap adaptation.

Warren’s brother, Bob, stopped by for a while to bring Warren the gas drops we reordered – those things are so helpful that we never want to be without them.

Our visiting Minister from church, Bob Bough, came by to visit and say a welcomed prayer with us.

There were many e-mails and phone calls regarding the business today – client concerns and our own. Frank Patrick – our good friend and investment guru, and Dale Watts – Warren’s former partner and close friend, are working together to coordinate plans for our future. We couldn’t be in better hands than we are with the two of them looking out for us!

We are very blessed to have so many friends who want to help – we just can’t thank you all enough! There are no words sufficiently adequate to express our gratitude for your thoughts, prayers, and act of kindness!

On a different matter, I saved the amazing for last. We had run the 45-minute RIFE Support Program on Warren for the last three days. We are hoping it will help to eradicate the lung scar tissue which hampers Warren’s breathing. Today we got really brave and decided to tackle what looked like the most difficult program – the two-hour footbath.

Yes everyone, we made our own batch of green-brown microbial soup. It was wonderfully disgusting to see all those awful things in the water and know that they are no longer in Warren! Some of the goop may have been debris from Friday’s chemo, too; definitely better out than in!

Tomorrow we will run the two-hour cancer program and must follow that within four hours by another two-hour footbath. The next day we are to run the two-hour candida program which also involves the footbath. And so it continues, alternating daily between those two patterns and fitting in the Support program as often as we can. I definitely have a new occupation as a full time private nurse!

Time to close this and bid you all a Good Night. There are still a few things to do before bed. Thanks so much for keeping us in your thoughts and prayers. We are still hoping and praying for a miracle!
 
Arnetta & Warren's Journal.
Wednesday, May 27, 2009 7:00 PM, EDT

Warren was back up ¼ pound to 138 this morning – not a spectacular difference but at least in the right direction.

It was another very busy day today. Since the RIFE machine arrived that will be the norm. This morning we did the two-hour QX2 cancer program which must be followed within four hours by the two hour footbath. To make good use of the footbath, we squeezed another 45 minute Support program in between QX2 and the footbath program. Yesterday, the footbath water was brown with a green tinge after the two hours. Today it was green with a tinge of brown. I have that in my questions to ask the doctor when we see her again on June 16th.

Celeste came at 1:30 today to make sure Dad got to the eye doctor on time. It is a very good thing he went – the pressure in his right eye was up to 40. Less than half that number (19) is what we strive for. For the next week, Dad now has two different eye drops to take – still the Travatan in each eye at bedtime, plus the new Azoft in each eye morning and evening. Next Wednesday, Celeste will take Dad back to Dr. Burke for a recheck.

I agree with Celeste that I will need to monitor Dad to make sure he gets the drops right morning and night. He is still remarkable for 94, but his confusion is becoming more evident to all of us (including him). I worry that he may have had another carotid artery mini-stroke that drove his eye pressure up so drastically.

Dad has also had a problem with a crown for a while now and he needs to have it taken care of. He told me it didn’t bother him and he wanted to handle the problem himself so it has gone unattended to for far too long. It’s clear now that Dad needs help and probably shouldn’t be driving on his own any more, either. In fact, he seems very content to be chauffeured everywhere. Celeste and I made an emergency appointment for him with his dentist today and Celeste will take him at 11am on Monday.

Even before Celeste returned with Dad this afternoon, as I climbed into the car to make a necessary quick run to the bank and the post office after Warren’s second tube feeding of the day, I said a big prayer, “Lord, I am responsible for the care of two people I love very much who are pretty much totally dependent on me for their welfare. Please make sure I am able to stay up to the task.” I felt immediate peace and support, in no small part thanks to all of you out there. As I’ve said many times, but can never say enough, thank you to all of you for everything from thoughts and prayers to not so random acts of kindness. Special thanks to Celeste for stepping in to help with Dad’s medical needs, and to my neighbor Diana, who faithfully does Dad’s grocery shopping along with ours and her own.

Speaking of those acts of kindness, Celeste did a perfect job on my hair – just the way I like it. I have found my new hairdresser!

I’m very pleased with my hair now. Just about all the dyed hair is finally gone and I love all the shades of gray and silver – the lighter the better! I embrace my gray and silver and wear the colors proudly – I earned every one of the gray strands; each one is a badge of courage!

In fact gray and silver are my new favorite colors for clothing, and jewelry, too. I’ve always heard that nature changes your skin color along with your hair as you get older so that they naturally blend well together. Maybe there is something to that – the color change seems to work for clothing as well.

Well, time to close, and get ready for the evening. Clearly tonight’s activity will involve watching the Wings (hopefully) win the conference championship in the quest for the Stanley cup. Go WINGS!

Have a great evening everyone and God Bless all of you!
 
NCF.
I read these Journals of Arnetta's & Warren's Every day. I am so fortunate, no one in my family has this dreaded disease. If I ever get it, or some one in my family gets it- Her experience and Knowlege will enlighten my load!
Thank Arnetta
 
Warren & Arnetta Journal
Thursday, May 28, 2009 7:02 PM, EDT
Warren warned me his weight would be down this morning because he had to go so much during the night. He was right - only137 lbs again! We’re hoping to keep that as a minimum. I wish he could eat more but he fills up so fast. The tube feedings are still the best source of calories and nutrition so we always try to get all three 16 ounce bags in – one drop at a time.

After a light breakfast of soymilk, juice and two Kashi bars, we ran the 45-minute Support program – that’s the shortest one. During the rest of the day, caring for Warren consisted of the mid morning tube feeding, the early afternoon tube feeding and the 1 hour and 10 minute Candida footbath. This evening he had a light dinner and there will be one more tube feeding before bedtime.

Warren and I are excited that we are really getting the hang of the Rife machine – it no longer seems at all daunting or scary. The incredible footbath results continue to astound us. Warren says he feels a little better each day, too. In fact, everyone who sees him notices the improvement in his skin color.

Today’s care schedule was relatively light; tomorrow there will be a full five hours worth of Rife programming to run besides the feedings, etc. So on alternate days, like today, I am able to get quite a bit of other stuff done – today there were lots of necessary phone calls regarding doctor visits, upcoming port surgery (Monday) and medicine.

I believe we may be able to save some money on the final two prescriptions of Tarceva! I started my discount search through Henry Ford and Medco when we had 18 of 30 pills left. Now I’m down to just four pills so we will run out Sunday night. The new drug company, Option Care, promised the Tarceva will be in my hands by next Monday. The representative said it would be a discount price but he couldn’t tell me how much. Option Care, is a subsidiary of Medco and we usually have very good luck with Medco so I hope for the best. Whatever the cost is, we are stuck with it at this late date! I hope it’s better than the previous $110 PER PILL!

This afternoon, I met with landscape guru, Rob Davis - the man responsible for our subdivision groundskeeping. Warren and I were hoping we could work with him to keep our lawn and gardens presentable. I found Rob personable and reasonable so we are delighted to be able to sign a contract with him.

It is a huge relief to have the yard work off our plate! Rob promises to have our yard looking incredible by Justin and Kate’s wedding reception party on Sunday, October 18. I’m sure Justin will be glad, too. Now he can concentrate on getting the pond area cleaned, running and gorgeous! And I can concentrate on getting the inside of the house presentable in case of inclement weather – a distinct possibility in mid October, I’m afraid.

I’ve many miles to go before I sleep, and I've relayed all of today’s news, so I bid you all a goodnight and sweet dreams. Thanks for checking in and, as always,God Be With You!
 
Dan, thank you with all my heart for posting Arnetta's journal. I read each and every one for we are sisters in the battle to save our loved one.
 
Hi Everyone,
My good friend, Dan Diamond, has done a wonderful job of posting my journal entries from the Caring Bridge site. I'm glad that so many of you have found them interesting and helpful enough to follow on our journey with us. I want to personally thank you for your notes of encouragement and the thoughts and prayers you've sent our way.

I noticed that Dan began to post the journal beginning on May 3rd - my 62nd birthday. At that time Warren and I were already 1 1/2 months into our journey with cancer. My earlier journal entries cover the beginning - days of despair, hope, love and encouragement. They may be helpful to anyone who is just beginning his or her journey with cancer - either for self or with a loved one. If you are interested, at the beginning of the Cancer Cachexia thread Dan has provided the Caring Bridge information to log on to Warren's site. From the journal heading, you can scroll back to the earlier entries or use the toggle at the top to change the order of the entries from the earliest to the latest.

I originally joined Net Cooking to pass on high calorie low volume recipes that I was developing in an effort to help people like Warren struggling with Cancer Cachexia. But in these pages I have found so much more. I feel the love, friendship and comaradery among you and extended to me. I thank you so much for that.

I do hope to get back to writing the recipes someday soon. Since Warren is on tube feeding, there isn't much room left for regular food. Later today, though, I hope to find time to poste the recipe for Vegetarian Spinach Lasagna that our neighbor made for us on my birthday. When Warren and I finally were able to try it, we loved it. Every couple bites he would say, "This is SO good!", and I would readily agree.

So until later, thanks for your friendship, thoughts and prayers. God be with you all.
Arnetta Mae Whitehouse
 
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Arnetta, illness is one of the most stressful things that a person can cope with because no matter how hard you try and no matter how many of the right things you control, one simply cannot control the outcome. Some things are best left in G-d's hands. It has been a very tough lesson that I have come to learn being a caregiver over the past 10 years. I use to beat myself up and take responsibility for things that weren't my part of the job.

I hope that you are buoyed by the love and support of family, friends and prayers. Bless you and Warren.
Best always, Susan
 
Friday, May 29, 2009 5:51 PM, EDT
Arnetta & Warren's Journal

Warren was up ¼ pound to 137.25 this morning.
From the minute he woke, Warren has mentioned several times today that he feels unusually tired. His digestion has also been very sluggish all day, making it difficult to do the tube feedings on time. It looks like we may barely finish before bed. He is now trying to eat a few bites of tuna noodle to enjoy a taste of regular food.

We finished the five hours of Rife sequence programs around 5pm. This afternoon’s footbath was again a very murky brownish green.

After the footbath, Warren slept soundly for about a half hour. As I gazed through the kitchen service window into the sunroom at Warren’s sleeping face, I was again struck by the fact that his skin color is very much normal now. Except for the fact that he is 30 pounds lighter than he was during his days of presumed health, that sleeping face could belong to the Warren W. Whitehouse 2008 model. I have to think that, in itself, is a very good sign!

We are disappointed that Warren’s lungs don’t seem to be getting noticeably better. Perhaps scar tissue takes a very long time to correct. We are hoping more chemo will help. His super oxygenated "Perfect Water" arrived today, too, so he will be drinking that from now on.

There isn’t much new to report today so, in closing, I’d like to share a poem with you that I received in an e-mail from Cousin Dolly Hatton this morning. Thanks Dolly!

The following poem really spoke to me so I decided to make it my official life’s mantra. Because the author was unnamed, I took the liberty of making a couple slight changes that I feel make it “flow” better for me. My apologies to the original writer if he or she reads it on this site. Be it known that I would be more than happy to give credit where much is due:

I May Never See Tomorrow

I may never see tomorrow,
There’s no written guarantee.
And things that happened yesterday,
Belong to history.

I cannot predict the future,
I cannot change the past.
I’ve just the present moment
And must treat it as my last.

I will use the moment wisely
For it soon will pass away,
And be lost to me forever
As part of yesterday.

I must exercise compassion,
Help the fallen to their feet,
Be a friend to the friendless,
Make an empty life complete.

The unkind things I do today
May never be undone,
And friendships that I fail to win
May nevermore be won.

I may not have another chance
On bended knee to pray,
So I thank God with humble heart
For giving me today.


Author Unknown
 
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Saturday, May 30, 2009 4:58 PM, EDT
Warren & Arnetta Journal


Warren was up a pound to 138.25 this morning. I don’t know whether to attribute the upward trend to luck, adding the Megace back in, or starting the Hydrazine Sulphate last Tuesday. Any gain may be attributable to none, one or all of the above. I just hope it continues!

There have been no other new developments today – good or bad. In other words, everything remains status quo – Warren is still very tired and short of breath and his color is still very good. The Candida footbath water was murky brownish-green again but maybe just a touch less opaque this time. That may be a good sign.

Last night, we had a bit of a scare. In his hurry to exit the couch when he spotted a big and ugly black spider on the arm of it, Warren fell on the floor. After that his stomach muscles hurt and he found it even harder to breath. His bedtime trip up the stairs was so hard on him that he was literally gasping for air and we both thought we might need to take him to emergency. Thankfully, once we got him lying down in bed, he was able to relax and his breathing improved. Today he is back to normal, or shall I say, what has become normal.

I try to understand why Warren - who never smoked a cigarette or even took a puff, never even thought about trying illegal drugs and never drank more than an occasional glass of wine or beer – is, according to doctors, going to die in 9 months or less. There just is no understanding it, I guess. Only God knows why these things happen. All I can do is thank God for the time He has given Warren, me and us, and pray that there is much more to come.

A minister once explained to me that God isn't like a puppeteer who controls good and bad. He doesn't make people sick or cause them to get into accidents. Instead, He sets the laws of Nature in Motion and promises to be there with us as we deal with the consequences of those laws. I guess I have a quarrel with Mother Nature. I think she definitely has a mean streak!

Along with all of you, we will keep hoping and praying that we manage to beat stage IV pancreatic cancer - definitely a sinister element from the "dark side" of Nature. Meanwhile, I thank God that, as promised, He is doing such a great job of helping us to deal with it's consequences.
 
Thanks Arnetta. I really like what you Minister told you!
"A minister once explained to me that God isn't like a puppeteer who controls good and bad. He doesn't make people sick or cause them to get into accidents. Instead, He sets the laws of Nature in Motion and promises to be there with us as we deal with the consequences of those laws."
" I guess I have a quarrel with Mother Nature. I think she definitely has a mean streak"
 
Sunday, May 31, 2009 9:43 PM, EDT
Arnetta & Warren Journal


139.25 pounds this morning. Yeah! Warren finally weighs more than my highest weight on any given day. That’s more like it! It’s also significant.

In January of 2005 I began my lifestyle change to permanently lose weight (I don’t diet). From my high weight of 205 in March of 1991, I had gotten down to 155 pounds by that fall following a very restricted low carb diet with hard to live by rules. When I tried to get back to a “real” life, my weight gradually crept back up to 196 pounds by the fall of 2004. I became determined to find the answer to my Yo-Yo Syndrome and, with God’s help, I did. (That’s a very long story that many of you know. E-mail me if you want to know more.)

When I began to close in on Warren’s weight range of 175 pounds by the summer of 2005, I was very excited. It had been many years since I had weighed less than him. Warren wasn’t happy with 175 for himself, though. He thought his ideal weight should be under 170 – about 168 - so he challenged me to a duel!

I really don’t remember who got to 168 first, but we both made it – then I kept going. I finally quit losing at 135 pounds (with a brief period at 133), and set maintenance for 136 (within a 3 pound range).

Even after I had clearly won “the contest”, Warren never gave up teasing me about it daily – always saying how he would catch up to me someday. He would sound so serious I almost thought he meant it sometimes. Finally, I got him to admit that anything under 165 would be too thin for him. It’s pretty ironic, then, that a cruel twist of fate allowed Warren to finally win the contest. We’d sure love to see him get those 30 + pounds back! Maybe we are on our way now!

Today is one of the five hours of Rife treatment days so it has been busy. It takes a while to set up each treatment. Then it’s tricky to time the five feedings with the treatments and all the homeopathic meds that may be helping him. The Ave Mar and the Hydrazine Sulphate (HZ) both have restriction regarding timing.

The Ave Mar hinders the cancer cells ability to use sugar (natural or converted) as a fuel. It must be taken one hour before or after a meal and 2 hours before or after taking any other medications or supplements. The Hydrazine Sulphate blocks a liver enzyme that enables cancer cells to feed. It must be taken one to two hours before a meal. We started with one HZ before dinner for three days. Today was the first day of two HZ capsules – one in the am and one in the pm for four days. After that, I need to work in an HZ at noon, too, until the bottle of 100 is gone. Warren also must take Vitamin C with iron every other day, ZMA and colace for regularity, and gas drops morning and evening for stomach comfort. Right now mid day is a good time for Ave Mar but the noon time HZ will make it much more difficult to fit everything in. With the second bottle of HZ I can go back to am and pm dosage. Maybe by then, Warren will be back to his ideal weight range and he won’t need the meds anymore – Hope ALWAYS springs eternal!

Justin and Kate were here for dinner this evening. Justin worked on the pond for a while before dark cleaning out the sludge and debris from the winter. When he came in I showed him and Kate the water from Warren’s footbath that I hadn’t had time to empty yet. They were both astounded and in agreement that it looked just about as bad as the stuff they emptied from the pond. It really is phenomenal to see what the human body can leave in clean tap water!

We must go to be early tonight so I need to sign off quickly. Warren needs to be at the hospital at 8am to be prepared for the port surgical procedure at 9:30.

No time to proofread so please forgive any mistakes. I'll edit tomorrow afternoon. Have a great night everyone
 
Tuesday, June 2, 2009 6:44 PM, EDT
Warren & Arnetta Journal


Warren maintained his 139.5 pounds this morning despite the port surgery yesterday. Chemo today may cause us to lose a little ground if we can’t squeeze in the last feeding tonight but we will try during the Wings game.

Warren’s major problem continues to be his struggle to breathe. Our friend Brooke knows how that feels. Brooke has Scleroderma - an autoimmune disease that affects the body organs. It can cause all internal organs and the human external organ, the skin, to become tough and inflexible - almost like leather. Brooke’s lungs are so inflexible that she depends on oxygen supplementation to help her breathe. That is how Warren’s lung scar tissue seems to be affecting him.

Like Brooke, Warren’s oxygen saturation level of 96 or 97 while he is quietly sitting makes him ineligible for home oxygen; but, also like Brooke, if Warren walks more than a few small steps, he is gasping for air and on the verge of collapse.

Today Brooke told me that she was at first refused approval for home oxygen until she asked the examiner to test her after she walked a little way or climbed a few steps. Her request worked – Medicare covers oxygen for her. My friend, Julie, whose ailing husband was finally given home oxygen, had an experience similar to Brooke’s.

Warren has gotten so short of breath that he feels he just can’t keep going on like he is. The simplest task – even putting on his shirt with my help – causes him to gasp for air. He even calls me in from the other room to add or remove a feather light down comforter for him or pour him a glass of water from the bedside decanter. In short, Warren has been rendered virtually helpless by his inability to breathe.

This morning we decided that we would consult with a pulmonary specialist to see if a pulmonary doctor could somehow provide Warren with some relief. However, since having chemo today, seeing the specialist has become “Plan B”.

The chemo nurse said that, although everything else looks good, Warren’s blood stats are getting too low to continue with chemo beyond this week. She explained that the iron I have been giving him isn’t helping because the chemo has destroyed too much of the bone marrow. The bone marrow, of course, makes the red blood cells that carry the oxygenated blood to the rest of the body. Consequently, at 8:30am this coming Thursday, June 4, Warren will be getting two units of blood. The nurse says the increased blood supply should help the breathing problem considerably. We sure hope so. If not, it’s on to “Plan B”. Then, if that fails, we petition Medicare (which Warren will be on soon) to provide him with home oxygen.

In good news today, Brooke and Reid, brought us a great wheelchair from church just in time for Warren and me to take our own wheels to chemo. A few times, when they didn’t have any wheelchairs at the cancer center door, I’ve had to leave Warren in the car and go all the way to the main lobby (quite a distance from the cancer center) to get a wheelchair to bring Warren in. Then I would need to take the chair all the way back to the lobby after getting Warren back into the car following chemo. It was very special today to be able to park in a super close Handicapped parking spot and pull our own wheelchair out of the trunk of our car. Best of all, the new wheelchair pushes and rides like a dream. Many thanks to Brooke and Reid for picking out a good one from the church – Baby Blue just like Warren’s eyes!

I guess that’s about it for today, folks. Thanks, as always, for your thoughts and prayers. It bolsters our spirits daily to know that you are all out there thinking about us and praying for the best outcome for our family
 
Wednesday, June 3, 2009 7:05 PM, EDT
Arnetta and Warren Journal

Warren was down 2 ¼ pounds this morning – from 139.5 to 137.25. We were disappointed but we weren’t too surprised; we knew the surgery Monday and chemo yesterday would take its toll.

Warren has slept most of the day today. He hasn’t had enough energy to eat anything by mouth since his Kashi bar and soy milk at breakfast, so we are making sure that he at least gets his three full tube feedings.

We will be glad to get two units of blood into Warren tomorrow to see if that helps his breathing. My friend and nurse, Julee, thinks the extra blood may help a little but it won’t be the fix we are hoping for. She says that Warren’s hemoglobin level of 8.6 (from blood taken on Monday before the port surgery) wouldn’t be enough in and of itself to explain Warren’s profound weakness and shortness of breath. However, there were several other low numbers in the blood stats besides the hemoglobin so I guess it’s possible that they could also be having a negative effect that will be helped by the transfusion.

When our chemo nurse first suggested the transfusion she said that Dr. Doyle was out of town so he couldn’t approve it, but she would take the blood and have it tested in anticipation of the doctor’s approval. By the end of chemo, that same nurse came back and told us that she had set up the appointment for the transfusion because she was positive that no doctor would deny the advisability of the procedure.

While we are at the hospital tomorrow, Julee suggested that we ask them to put a portable monitor on Warren and walk a little ways with him. That alone may prove that he could benefit from home oxygen. If that doesn’t show enough need, Julee suggested that we request a home monitor for Warren that will track how far his saturation level falls during activity. Both those ideas sound like a good plan.

We didn’t do any Rife programs today – Warren was so tired and we figured we probably shouldn’t mess around within a couple days of chemo – wouldn’t want to rid the body of chemo toxins before they had a chance to do their job! Dr. New said she wrote the RIFE programs to not interfere with chemo but we want to be on the safe side. We will concentrate more on the RIFE between rounds of chemo.

So today was kind of a laid back day. There were a million things I could have and maybe should have done, but I chose to do something fun. Our sunroom gas furnace had a blistered finish on the lower half due to the fact that one of our cats had sprayed it a lot during his adjustment period. His spray went through the fireplace screen so I didn’t notice he had been doing it for a while and the uric acid ate into the finish. Every time we used the heater – which has been a lot because Warren is ALWAYS cold – seeing the damage bothered me. The spirit moved me so I sanded it down and painted it with Rustoleum satin black BBQ paint. It really looks good and I had fun doing it – so much fun, in fact, that Celeste was amazed at how “upbeat” I sounded when she called to check on me.

I’ve always been happiest when “doing”. My mother used to tell people that she always had clean cupboards because her daughter – me – loved to clean and organize them for “fun”. Yep, it sounds weird, but that’s me. From the time I was little I’ve always loved dolls, playing house, cleaning and fixing, gardening and playing office. Also, one of my very favorite Christmas gifts when I was four years old was a very nice nurse’s outfit and a nursing kit. No wonder my life as Warren’s secretary and wife has suited me so well for many years. And now, to top it off, I get to be his nurse. I’m hoping to retire from the full time nursing job, though, and get back to my former favorite occupations – of course, still as Warren’s wife! Hope springs eternal!
 
Thursday, June 4, 2009 6:02 PM, EDT
Warren & Arnetta Journal


Warren was up 1-¼ pounds to 138.5 this morning. Maybe by tomorrow he will be back to 139.5, especially after getting two units of blood today.

Warren woke up with a sour stomach and a bit nauseated. In fact, he really hasn’t felt well since chemo this past Tuesday. With trepidation, we decided to give him an anti-nausea pill – Prochlorperazine. Fortunately, the medication did help his “sour stomach”, but we will need to watch for the involuntary movements it caused before to resume so that we can counteract them with the Benztropine.

We got to the hospital as scheduled at 8:30 am and managed to nab the private room at the end of the chemo hall. We were happy about that since we would be there for another, as it turns out, 7 hours while Warren received two units of whole blood.

While we were at the hospital, Warren managed to eat 880 calories worth of bars and snacks so we didn’t lose any ground regarding calorie intake. He is having a tube feeding since we got home and, hopefully, will be ready for another one while we watch the Wings this evening.

Warren's stomach still feels a little “sour”. In fact, when I checked it for residual the stuff drawn into the tube literally smelled like Warren had swallowed an entire bottle of vinegar. Now we know why they call it “sour” stomach.

While we were in the chemo room today, we had a visit from a hospital volunteer, Jeff, who was passing out treats and spreading much cheer. (By the way Sun Chips are very good – kind of a cross between potato chips, Fritos and Wheat Thins, all favorites of ours.)

Jeff noticed that Warren was under a few blankets and said to him, “You should have a hat on. When I was in chemo, that really helped me to stay warm”. With that sage advice, Jeff quickly disappeared. Fortunately, Warren had his thermal lined hooded sweatshirt on, so we pulled the hood over his head and it helped almost instantly!

Of course, Warren and I don’t know why we didn’t think of the hood ourselves this time; previously we have. Just maybe God wanted us to ask Jeff about his personal experience. Jeff came back a little while later and, after we thanked him for the tip, we asked him about his story.

Five years ago, Jeff was given only 24 weeks to live with a brain tumor. Surgeons had operated but were only able to remove a small fraction of the cancerous growth. Doctors didn’t give Jeff ANY hope of survival beyond 24 weeks. But he says he prayed and God saved him. Then, with a sweeping hand gesture toward all the equipment in the room, Jeff continued – “with all his tools that you see around you”.

Jeff says the tumor is still in his head but he is in remission. For five years, the tumor hasn’t changed and he feels great. Since leaving that period of hopelessness behind, Jeff does what he can to pass hope on to others. “Remember”, he says, “doctors aren’t God; they are only his helpers!” Amen!

After the two units of blood were in Warren, we expected he would feel better right away; but he didn’t so that was disappointing. However, Nurse Mary volunteered the information that it would take a couple days for his numbers to come up, so we hold out hope for the weekend to be better. The other nurses had given us the impression that Warren would be able to get up and walk out on his own.

One of our aims today was to test Warren’s hemoglobin saturation level during activity. We had help from a chemo nurse, Robin, who had worked with a pulmonary doctor. Robin put a portable meter on Warren and walked the short distance to the lavatory with him. She could see that he struggled mightily to breath and his heart reacted to the stress, but the saturation meter never dropped any lower than 95% in spite of Warren’s increasing struggle to draw a breath.

Robin did some breathing exercises with Warren that seemed to help. She explained that doctors and nurses must teach their pulmonary patients to breathe in a similar fashion. When it’s difficult to draw a breath, it’s natural to panic and hyperventilate, thereby compounding the problem. During shallow breathing, carbon dioxide builds up in the lungs increasing the body’s struggle for oxygen and, therefore, the patient's anxiety resulting in a vicious exponentially spiraling cycle. Robin told Warren to focus his eyes on something and think about expelling all the air in his lungs out, then concentrate on drawing in as much fresh air as he possibly can. Robin told me that I should keep reminding Warren to breathe deeply and make sure he is focusing on something (like my face) during the exercise.

We are still interested in getting a home monitor so that we can test Warren more thoroughly – especially when he goes up the stairs to bed. Robin suggested that we should call Dr. Doyle tomorrow and ask that he refer Warren to a pulmonologist for consultation. The pulmonologist would need to order the at home monitoring device if Warren meets the criteria. Robin wasn’t sure what the “criteria” is at the present time.

Well, folks, it’s time to finish dinner and get on with our evening. I’m going to thoroughly clean and oil the wonderful wheelchair that Brooke and Reid delivered to us from the church. It would be amazing if the chair became even easier to push. Judging by how loudly the foot rests squeaked when we put them up or down before I used the WD40 on them, it’s been a while since the chair received any maintenance. Maybe it can be even more wonderful
 
Friday, June 5, 2009 6:08 PM, EDT
Arnetta & Warren Journal
We didn’t weigh Warren this morning; there would have been no point to it since he ate his breakfast before getting out of bed. If we had done our usual routine, it would have been interesting to see if adding a couple units of blood would have precipitated a weight gain. However, when Warren woke up at 8am, he didn’t feel well enough to get his shower and come downstairs. Although his stomach felt sour, he had the idea that some soymilk and raisin bran might help him so I fed him breakfast in bed.

We are still waiting for the blood to make Warren “perk up” like the nurses predicted it would. Of course, we are ever mindful of the fact that, at least so far, nothing about Warren’s illness has been predictable. If he doesn’t improve soon, we will see a pulmonologist in hopes of finding some increased measure of comfort. Maybe the fluid is increasing again; it hasn’t been checked for a while. Next Tuesday will be Warren’s last chemo in this set, so they will probably check him out during his week off.

We went to bed after the second period of the Wings game last night. Now we know that we had seen the final score and didn’t miss anything. I’m glad to have been distracted from watching the dismal fourth Wings game by my wheel chair clean up project. The chair sure didn’t look as dirty before I started as the bucket of water indicated it had been by the time I was done! I think the wheels got coffee spilled on them during fellowship time at church. The chair cleaned up so well it looks like it just left the showroom. It glides along even better now, too, since I removed a piece of string I found wound around one of the small wheel axles and sprayed a little WD40 on all the moving parts.

Soon, we will be able to return the wheel chair loaner to the church in prime condition. Our daughter, Caryn, called this morning – she found a very nice wheelchair at a neighbor’s garage sale for only $20! That’s my girl! Now we will have our very own family chair. Warren gets to use it first, but it’s something we will keep in storage. You never know when a wheel chair might come in handy! In fact, having the chair is probably the best insurance that no one else in our family will ever need it, just like the crutches we’ve had in the closet for ten years. It’s a very good thing my desk is wood – knock, knock!!!

If things continue status quo, I will probably take a couple days off from journaling now and then starting with this weekend. I’m starting to get into some big organizational projects around the house so I’m finding my time is pretty limited.

Thank you for your faithfulness in checking our progress in this journey. I will definitely keep you all informed of any new developments. Meanwhile, we truly appreciate all the prayers and well wishes you continue to send our way!
 
Saturday, June 6, 2009 5:09 PM, EDT
Arnetta & Warren Journal



Warren weighed 138.5 this morning thus matching his last weigh in on Thursday. Missing a meal yesterday because he didn’t feel well all day probably offset the addition of the two units of blood on Thursday. Warren told me he is determined to make it to 140 before his next chemo on Tuesday.

A few things have prompted me to thwart my expected absence over the weekend. I just caught Warren putting on his own sweatshirt without calling me in to help! So the good news is, true to nurse Mary’s prediction, Warren’s numbers must be up. He confirms that he feels stronger this afternoon – exactly two days following the blood transfusion, just like Mary said he would!

Unfortunately, there is still a negative to report. Even though Warren, with great effort, has been visibly and audibly breathing in and exhaling more deeply, his breathing has not improved. He told me this morning that it feels like his diaphragm just isn’t responding to his efforts – in fact, he feels as if it’s not moving at all. We know that the lungs are stiff from scar tissue, but I haven’t a clue as to why the diaphragm would not be functioning. I’m open to suggestions and theories. We will definitely be going to see a pulmonologist this coming week.

I’ve just set Warren up with the two-hour RIFE footbath after running the two-hour cancer program earlier today – it’s time to get rid of all those dead cancer cells and other toxins!

Yesterday, Warren didn’t feel well enough to even consider doing the RIFE footbath. He must be able to sit up straight for two hours with his feet flat on the floor in a bath of warm salt water. Since the footbath must be run within four hours of the cancer program, we couldn’t do either one. I’m glad he was feeling well enough today to do the pair of programs. Tomorrow we will run the support program and the Candida footbath.

Tonight I will be rearranging the family room on graph paper in an effort to make it more wheelchair friendly. I like to do it on graph paper first to make sure everything will fit where I think I want it. I still may not like it when it’s finished but chances are much better that it will work out logistically if I do it that way. It’s time for a change – the room has been the same way for eons!

Time to get on with those big projects I’m working on. We hope the Wings are successful with their big project tonight – making it 3 to 2, Wings!

Thanks for checking in again everyone. Have a great evening and God bless us, every one!
 
At the thread initiator's request, his two threads in this category have been merged and all cartoons deleted.

Buzz
 
Monday, June 8, 2009 7:15 PM, EDT
WARREN & ARNETTA JOURNAL


Early in the morning on Sunday, June 7th, before Warren woke, my first thought to record was, "I hope the ice is still okay at the Joe. The Penguin’s classless meltdown last night heated everything up to the danger point except, of course, our class act Wings. I watch a lot of hockey and there is no other team in the NHL that, player for player, can match the integrity and the sportsmanship of the Wings.”

After that thought, I meant to come back and finish the journal entry later but, as it turns out, I finally took the day off that I had promised myself and all of you out there. (I missed journalling though.) I had a bunch of coin to sort and roll for a United Methodist Women deposit to be made today, and I didn’t want to miss any of the quarters I need for my seven state quarter collections – one set for each grandchild, one for each child and one for me. That incentive prompted me to put all the quarters from my loose collection into the seven books. I ended up exchanging bills for a lot of quarters that I needed to help fill the books. By the time I finished that project, Jay and Kate arrived so Warren and I enjoyed the whole evening with them.

Speaking of quarters, I can’t believe that I don’t have any Utah quarters beyond the two uncirculated ones in our Postal Commemorative Society Collection so I need all seven of those. I also need five each of Washington, Wyoming, Montana and Idaho, three each of Alaska, Oklahoma, and Nebraska, and one each of Georgia, North Carolina, Indiana, Illinois, Arkansas, Oregon, Kansas, West Virginia, South Dakota, New Mexico and Arizona. If any of my readers have those, I’d love to make exchanges with you.

Today Caryn came for the day while her German houseguest, Andrea Golisch, spent the day with Beth. The three older girls are still in school this week then they will be out for the summer. Thank you SOOOO much, Andrea, for giving the three of us - me, Warren and Caryn - the time together today. We had a very wonderful visit!

Caryn and I enjoyed a tuna wrap lunch (I still eat limited fish but no other meat) and talked some “girl talk” while Warren snoozed. Next Caryn and I spent some time cleaning up the wheel chair she had found for us at a neighbor’s garage sale.

The garage sale wheel chair looks showroom new now. The little bit of rust on the bottom came right off with a light sanding and finishing with fine steel wool. Now the patina chrome finish looks uniform and very classy. Whoever owned the chair had just replaced the tires on it, too – they are obviously brand new. The chair is narrow and lightweight, and the seat, back and arms are Michigan (UM) blue – how appropriate! As a final touch, I rubbed all the cleaned chrome with a very light coat of canola oil (any oil would do) to prevent the rust from coming back, then buffed the chrome with a clean, dry, soft cloth.

We intend to keep both nice wheelchairs for a while to make sure all goes well. In fact, if I can get the path cleared and the carpet ripped up upstairs between the bed and the bathroom, we may use one up of the wheelchairs up there during the night.

Eventually I will return at least one of the two wheelchairs we have borrowed from the church in the past ten years. I will need to clean the oldest one up first. Since Dad found the foot rests in his attic, it is useful again.

Now for the main subject; I want to say something positive about Warren today, but I’m limited to the fact that his color still looks pretty good. Unfortunately, he has endured a couple miserable and discouraging days. He doesn’t feel appreciably stronger since the blood transfusion and his breathing is no better despite his continuing efforts at deep breathing. He doesn’t feel up to doing much of anything but sitting or laying on the couch all day. I think the footbath could help but he is just too exhausted to sit for it so I haven’t pushed it. The pain in his pancreas and stomach area has returned and his appetite is nil. We barely get his three tube feedings down every day, let alone any extra food. He generally tests ready to feed when I check residuals, but he is always fearful that putting more of anything in his intestines will make him hurt more.

Warren thinks his digestion may be stopped up again and I suppose that’s possible. His last food by mouth (Saturday late afternoon) was the toasted cheese sandwich he was hungry for. Since then he has gotten increasingly worse and, as most of you know, cheese is as “binding” as peanut butter. Most of the things Warren loves contain lots and lots of cheese in many different forms. If he can’t have cheese and shouldn’t eat meat or high carbohydrates foods, that doesn’t leave a whole lot of healthy high calorie foods he can eat. Fruits and vegetables fill him up too much to be able to get the highly nutritious, high calorie formula down. We have decided to stick with only the liquid formula and Ensure for a long time to come.

Time to get on with our evening so I will sign off now. Thanks for stopping by and for keeping the prayers coming. We appreciate all of you more than words could ever say!
 
One of the guys who used to work for me, called me tonight to let me know they were going to put him into a Hospice. His Cancer has spread to his lungs, and was told he had less than 2 Month to live. His Name is Bud!
I felt very uncomfortable talking with him at first, That bothered me, cause he called me basically for support! I was pretty much tongue tied. So he talked, and he assured me he was not affraid of dying, and asked about his dogs (My neighbor takes care of them). I found out this was not a time for me to talk, but to listen.
images
 
Tuesday, June 9, 2009 7:58 PM, EDT
WARREN & ARNETTA JOURNAL


A couple days of feeling rough showed up on the scale this morning – Warren was only 137 pounds. However, we think we have some answers and we’re thinking very positive thoughts again.

Last night I received a call from our very good friend, Sandi, regarding Warren’s constant struggle to breathe. Sandi’s sister, Jan, had seen her husband, Tom, through terminal lung cancer so Sandi thought Jan might have some points for us.

Like Warren, Tom was given only one year but he actually lived for another four to five years – that in itself is encouraging. Even more encouraging is the fact that we truly believe Sandi was destined to give us an important message regarding Warren’s breathing issues and his strength. I’m so glad Sandi listened to that voice within herself and gave us a call.

After having read yesterday’s journal, Sandi had called her sister, Jan, and talked with her at length about the details of her experience with Tom’s illness. Jan’s first advice for us was to enlist the help of Hospice and get that set up before we actually need it. Jan said that if Hospice is already in place before times get really bad, it’s that much less to think about in the end. Best of all, according to Jan, Hospice made the road leading up to the most critical time in Tom’s illness much smoother for Tom and for her.

Jan told Sandi that she had resisted calling Hospice at first because it was like throwing in the towel. However, when she finally called them they were very supportive and wonderful. They took care of everything from the set up for physical care to emotional support for both Tom and her. Jan and Sandi, too, emphasized that enlisting Hospice isn’t like “giving up”, it’s just being well prepared for one possible eventual outcome.

In our case, our oncologist, Dr. Doyle, seemed to be giving Warren and me a choice – Hospice or continue with chemo. Is any one out there familiar enough with protocol to clarify the ambiguity? Can we do chemo in hopes of getting well and be on Hospice at the same time?

Regarding Warren’s breathing problems, we think Sandi is “right on”! Sandi says that Tom had the same symptoms with his lung cancer that Warren is experiencing. Also like us, Jan and Tom decided to go to a pulmonologist. That decision didn’t work out very well for them. The pulmonologist looked at Tom and then said something like ‘He’s dying of lung cancer. What did you expect?’ I’m glad we didn’t waste our time seeing a a pulmonologist if that is a common reaction among them regarding victims of lung cancer.

Jan and Tom went back to their oncologist and posed the same questions to him. The oncologist told them that Tom needed to move more and push himself to perform beyond the comfort zone. He needed to walk and try to increase his activity every day. He told the couple that all Tom’s muscles – heart, respiratory, limbs, etc. - were becoming atrophic and every day that he didn’t use them, they would keep getting worse.

Warren and I are now sure that is what was happening to him – all the pieces fit. He began to “save” his strength to get up the stairs at night so he had me wheel him everywhere in the house instead of trying to walk from place to place as he had been doing. Warren says now that he had become "lazy" and reluctant to push himself especially when he didn’t feel well – he was so sick and tired of being sick and tired that he just wanted to rest.

Warren is fired up to change his activity level now and he is doing a great job of it so far. He has walked everywhere in the house with his stick since Sandi called last night and he is finding out that it’s not too hard to do after all.

We did use the wheel chair to get into chemo today – Warren will need to work up to longer walks but he is determined to get there! It was almost the Grand Canyon all over again - I was the one that had to insist that he shouldn’t tackle the long walk into chemo quite this soon. He will get there all in good time!
Jan told Sandi that in Tom’s case, they cleared a path in the house for Tom to walk using his wheelchair as a walker. Then if he got too tired, he could sit down in the chair. Those of you who know our house are aware that it’s a tight squeeze for a wheelchair. I have a hard time missing doorways and furniture sometimes when I’m pushing him. If Warren were to give out and fall behind the chair there is no telling what disaster might follow.

I’m hoping to get my hands on a walker with a built in seat. Such a walker would be much easier for Warren to maneuver, and if he felt suddenly tired, he could sit down quickly without having to walk around to the front of the chair to do so. In the seated walker my friend, Vickie, has, the seat faces her and she just needs to turn her body and sit down when necessary. When Vickie isn’t sitting in the seat, she can use it to hold her purse or other package. If anyone has such a walker that they aren’t currently using or knows of someone who does and is willing to loan it to us for a while, please let us know. We would really appreciate it. Meanwhile, I’ll look on the Internet and see what I can find.

Well, it’s almost time for the Wings to bring Stanley home – HOPE, HOPE, HOPE! Warren and I didn’t get home from chemo until almost 5:30 and had lots to do so I’m running late. We are excited about our new determination, though, so I wanted to share the info with all of you.

God continues to help us through our friends in ways both great and small. I even got 14 of my missing quarters through our friend, Ray Berger, who was nice enough to drive over her with them and pay us a welcomed visit!

You guys are all VERY wonderful and we thank you from the bottoms of our hearts!
 
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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Journal

Wednesday, June 10, 2009 6:41 PM, EDT

I want to receive Journal update notification e-mails.
Warren’s weight was up to 137.75 this morning so I guess we are doing okay with the tube feedings alone. I’m so glad we have that feeding option because Warren has been too sick to feel up to eating anything by mouth. He did drink a Vanilla Ensure Plus this morning to try to increase his calorie intake but I don’t really count that as “food” – it’s a 350 calorie 8-ounce drink to me.

This has been a rough day for Warren. Fortunately, he has slept through most of it. He did manage to perk up for a short visit from our close friends, Tom and Carol, but right after they left he was back to sleep again.

When Warren first started the chemo on March 20th, we were amazed at how few side effects he suffered afterward. We had both heard many horror stories about the toxic effects of chemo. Of course, Warren was already pretty sick from the effects of the cancer itself but he really felt no worse after the chemo. The same held true for the next few treatments. However, by the time he got to the seventh one in that first series of seven, he was beginning to feel some debilitating side effects – extreme bone-deep fatigue, an unsettled and sluggish stomach, profound weakness and a general malaise. Those feelings seem to be growing exponentially with each successive treatment.

Last Tuesday our chemo nurse, Mary, confirmed what Warren and I had come to believe; chemo has a cumulative effect and every round gets tougher. We are glad to be done with the second round so Warren gets a week off, but now we really fear what we hope is the final round – the next group of three treatments beginning on Tuesday, June 23. Mary also informed us that we must come in and have blood drawn even on Warren’s week off in order to check his numbers. The chemo toxins, Mary explained, will still be working in his system between rounds and doctors need to make sure that his stats don’t drop to a dangerously low level. It looks like a very rough month ahead but Warren is determined to see it through and I support his decision.


We won't know until after the next round whether all this suffering is doing Warren any good. Best case scenario is that the cancer is gone. Worst case is that there has been no improvement. In between lies the possibility that there has been some improvement but not enough, in which case they may offer more rounds of chemo. I truly don't know if Warren could make it through more sessions given the cumulative nature of the treatments. I would be tempted to concentrate on trying the interesting alternative treatments I am reading about in conjunction with Hospice. Warren will need to make the final decision and I will support it.


In good news today, the response regarding my walker request has been great. My friend, Tony, from chorus told me he should be able to get one by tomorrow. His parents have two that they aren’t using. If that offer falls through for any reason, there are reportedly two at our church to choose from. Warren’s brother Bob called to tell me that he went out and bought a nice one (which he can return) just in case I couldn’t find a loaner.

Wow! What a great support group you all are. I wish everyone could be as lucky as we are! We feel so very blessed. Caring Bridge has been a great communication tool and you have all been wonderful at crossing that bridge to show that you truly care. Warren and I are both deeply grateful for all your kindnesses and support - from thoughts and prayers to pitching in wherever and whenever you are able. Thanks to everyone and God Bless You All!
 
Thursday, June 11, 2009 4:13 PM, EDT
Arnetta & Warrens Journal.


Warren’s weight was 138.75 today – up a whole pound since yesterday. I credit the HZ (hydrazine sulfate) and/or the Ave Mar for helping Warren to maintain his weight. Since we started using them regularly his weight fluctuates within an acceptable range for the time being. The fact that he isn’t losing steadily indicates that the cancer cachexia is finally under control. Ultimately, of course, we would like to see a weight increase but Warren really isn’t consuming enough calories to cause him to gain weight. His digestion has generally been too sluggish to allow the two meals he would like as well as three full tube feedings.

There’s additional good news today – Warren is feeling better. In fact, not only is Warren feeling better than he did just before chemo, he is feeling better than he has in quite some time. As of late this afternoon, it will have been 48 hours since chemo so feeling better is pretty much right on schedule. The extra is a welcomed bonus.

Signs of Warren feeling better are many. He is breathing more easily - we still thank Sandi’s counsel for that! Warren also has enthusiasm for things again – including exercising and getting back to RIFE tomorrow. As I and the family have reminded Warren, his color started to improve when we used the rife schedule.

A more personal joy is that Warren is more cheerful and loving to me. He showered me with praises last night about what a wonderful job I am doing taking care of him, and he told me how very much he loves me. I had tears then and I have tears now as I recall the tender moment. It was so good to hear those three words again. My Warren is back and he says he is determined to stay!

This morning, Bob brought over the brand new seated walker he bought yesterday for Warren to try – it works great! We are leaving the wheel covers on the new walker so that Bob can return it when we get a “loaner”. Bob is encouraging us to keep it if we want to, but he has done, and is doing, so much for us already, that we haven’t decided. First we will see what else is available from Tony or the church.

While Bob was here, Warren and I mentioned bringing the stationary bike up from downstairs and putting it in the sunroom so Warren can exercise his legs while sitting. We figured Bob would need Justin’s help with the task this Sunday because the bike is so heavy, but before it even dawned on us that Bob had gone downstairs, he was more than halfway up the steps with the bike in hand. As I’ve said before, Bob is VERY fit and strong.

The bike fits fine next to the recliner chair in front of the TV so Warren can watch his programs while he peddles. When we put the bike in place Warren was heard to say, “Now I have no excuse”. I’d say he does have some excuse, but we’ll downplay that for now and encourage him to try. I’m sure he will need to start very slowly.

Warren was done with his second tube feeding by 3:30pm today so his digestion seems to have really improved! We should be able to get in one more tube feeding AND another mini meal. Warren started the day with an Ensure Plus so that makes five feedings! Wish us luck with the last two but I really think it’s a lock! God is SO Good!
 
Friday, June 12, 2009 7:19 PM, EDT
warren & arnetta journal


Warren weighed 139.25 this morning so that was wonderful, but the day went downhill from there. For just once, I’d love to be able to have good news to report for two days in a row!

It’s possible that Warren overdid it in his enthusiasm yesterday - shades of the Grand Canyon. For whatever reason, he has been very tired and dizzy today. We may be able to get all the feedings in but all ideas of RIFE and exercise went out the window for now. As always, hope springs eternal for both of us – maybe tomorrow will be much better!
We did make a good tasting discovery last night. Warren enjoys letting a few squares of dark chocolate melt in his mouth when there isn’t room for anything else. Last night he consumed two and one half pieces for an easy 125 calories; and, of course, there’s all those antioxidants and feel good serotonin enhancers, too, in the dark chocolate. Warren is looking forward to some more this evening.
I found out today just how computer challenged I am. After using a free scan by Pareto Driver Cure to see what needed updating on my computer, I was impressed by promises of improved performance if I signed up for the service. My computer is aggravatingly slow according to me and everyone else that tries to use it.

The cost of the Pareto Driver Cure program was reasonable so I purchased and downloaded it to my desktop computer. The first couple things I did went well and I was happy with the results. A couple things I tried to update couldn’t be done according to the program so I skipped those. In one case the program removed the current driver and, when it found it couldn’t install the updated one, it reinstalled the one it had removed. I wasn’t so lucky the next time. The program removed something and left me with no connection to the Internet on my desktop computer. At least I think that is what happened. When I try to access the program, it tells me to get connected to the Internet. I tried everything and there is no connection to be had from that computer. All the others in the house are just fine – well almost “just fine”.
I am typing this journal entry on my laptop with a trial version of Microsoft Word 2007 because the regular Microsoft word installed on my laptop computer wouldn’t work. (The trial version expires on July 31, 2009.) I’m a pretty fast typist but it’s slow going for me because I can’t get the wireless ergonomic keyboard – the configuration I’m used to – to work. Warren bought me the keyboard for Christmas so that I would get more use out of my laptop and I really would love to be able to use it. I put in new batteries but that’s as far as I could get.
My in-house computer guru (Warren) is indisposed and incapacitated and I’m obviously inept. I know I have some computer experts in our group of friends, so I’m hoping someone can come and be a stand in for Warren to get my computer options available to me again. I’ve spent most of my “spare time” today trying to undo the damage I have done but to no avail.

I could get really used to this sunroom lap top in front of the big screen TV combination; Warren is having his final tube feeding while we watch the pregame show and I write. I do hope the Wings win in regulation tonight. Warren and I can't make it in an upright position past 10:30pm!

Good night, God Bless and GO WINGS!
 
Saturday, June 13, 2009 6:23 PM, EDT
Arnetta & Warren Journal
Warren weighed in at 139.5 this morning – up ¼ pound. He seems to be gainingly steadily. He feels better than he did yesterday, too, so he’s been walking to the lavatory again and even peddled the stationary bike for a couple minutes this afternoon.
We still didn’t do the Rife today even though Warren keeps saying he wants to. We both think we will be able to concentrate on it more wholeheartedly when he is finished with chemo on July 7th. At any rate, he has told me he is determined to do his Rife treatments every day next week since he has no scheduled chemo.
Warren might have shown more weight gain if I had remembered to take him his Ensure Plus in bed. I have done that the last couple mornings so he can drink it before weighing in and showering. Maybe he would have reached his 140 goal already if I had been on the ball! Having been awake since 3:15am and physically up since 4am, I was deep in concentration at my desk balancing bank accounts when I heard Warren call over the monitor. I rushed upstairs without thinking.
I was frustrated when I couldn’t sleep last night. I had been sleeping so well every night and was very pleased about that. I know I need my rest to get through the days in good health. However, I had a Miller 64 during the Wing’s game – I had to wash that pitiful game down with something!

It’s been so long since I enjoyed a beer that I got a buzz from it – even a beer as lite as a Miller 64! I think waking up at 3:15 was due to the famous “rebound effect” that can result from drinking wine or beer before bed. According to some authorities, drinking alcohol before bed can make a person sleepy at first, only to wake up later feeling wired. That was me. I realized I had little idea how much money I had available and it’s something I definitely need to know this month. Actually, I’ve felt fine all day but I’m pretty sure I will crash this evening.
In other news, Christmas is finally over and the game room is cleared of all the boxes of decorations! Caryn and family, including our three German Golisch guests, will be in Farmington Hills tomorrow for an event, so they will stop by here for a short evening visit before heading back to Lansing. The timing is good since Jay and Kate will be here, too, and the German Golisches will be able to meet the newest member of our family.
The cluttered game room has really been bugging me and the Golisch boys LOVE to play billiards; I was very glad to have incentive to get at that job! Believe it or not, it was fun! I swept the garage floor and put a tarp down as a moisture barrier; then Dad helped me carry all the boxes out and arrange them on the tarp. The next step is to organize the attic enough to get what I plan to keep stored up there. The rest will go to Viet Nam Vets on June 30 when their truck is in the neighborhood (unless someone reading this has a better suggestion). I know the excess (and tons of other clutter, too) has to leave here. The garage will need to be cleared for the mind boggling file organization project to follow.
One other thing - if any of you have tried to call, Warren and I have been without phone service going on five days now. ATT promises to have it fixed sometime tomorrow. Also, I ran over my cell phone minutes and it almost cost me a small fortune so I was being very careful of my usage. Fortunately, the guy at ATT was nice enough to backdate my upgrade to get rid of some $200 in overtime minutes. Again, God is good! I never realized before that I get charged for minutes even when someone else initiates the call (unless it’s an ATT user). I’m told that is standard practice among cell phone providers. Amazing! No wonder I used almost exactly twice as many minutes as I was allowed on my original plan.
I’d better close this and finish up some stuff before that inevitable crash hits. Thanks for checking in. Have a great evening!
 
Sunday, June 14, 2009 10:18 PM, EDT

WARREN & ARNETTA JOURNAL


Yeah – 140.25 pounds this morning! We are SO happy about that – Warren has reached his goal and beyond! Next goal -142. He said 150 but I convinced him that it’s best to set realistic goals in small increments.
Warren walked wherever he went this morning using a walker. Last night Tony brought the seated walker he promised us and it is very nice. It is also quite different than the one Bob bought for us, and each walker has its unique advantages. The seat on Tony’s walker easily folds up and out of the way allowing Warren to literally stand upright inside the walker for added support, stability, and security. The padded seat on Bob’s gift walker is very comfortable and the walker is a little narrower so it is better for use inside our home. In conclusion, we want to use both walkers – the gift from Bob inside our home, and the walker Tony brought when we must venture out. The bigger one from Tony is already in our car for our trip to Henry Ford for a blood draw this week. We now have the best of both worlds! Thank you so much to both Bob and Tony!!! I’m going to put one of the wheelchairs in the trunk, too, so that we will be totally prepared for any eventuality when we are away from home.

By noon Warren was “walked out” and requested wheel chair service for the rest of the day. He was also too tired to use the stationary bike today. Maybe tomorrow.

We enjoyed our visit from the Golisches – both American and German – and Jay and Kate this afternoon and evening. I’m glad it was such a beautiful day – some enjoyed hitting some golf balls in the yard and Jay and Kate enjoyed working on the pond. The rest of us just enjoyed! It was so good to see everyone again! I swear all our granddaughters have grown and gotten even prettier since we saw them last. It’s been a long time - much too long!

After a while in the yard, the German boys, Michael and Alex, came in. They followed the sound of Caryn getting out the billiard balls then they were hooked!

I mentioned my computer problems to our guru son-in-law, Tim, and he got right on it. He gave me credit for knowing enough about what I had done to point him in the right direction but all the credit for smarts goes to him. Tim had me up, running and fully connected to the Internet in just a few minutes. He also set up my wireless ergonomic keyboard for use with my laptop in the sunroom. What a guy! Thank you to the other gurus who offered to come to my rescue this coming week – Darren , Kevin and Brad – but this time, thanks to Tim, it’s not necessary. I’m going to try to never mess up again!

Now it’s definitely time for bed. It’s been a fun and very busy day. I just love having a neater house, too! I will tuck Warren in then come back and post this, feed the cats and get the rubbish out before I join him.

Have a good night everyone; thanks for your thoughts and especially for your prayers!
 
Monday, June 15, 2009 7:20 PM, EDT
ARNETTA &WARREN JOURNAL
Wow -142 pounds – up 1 ¾ pounds since yesterday morning! Since we have perfected the very tricky timing involved in the administration of the Ave Mar and Hydrazine Sulfate supplements, they seem to be working far beyond our expectations. I’m using my oven timer and a more detailed schedule sheet (done in Excel) to accomplish what, at first glance, looked almost impossible. Next goal – 145 pounds!
Warren seems to have more energy today. He has used the walker all day and got on the exercise bike for a couple minutes, too.
This morning, Warren and I talked about our future plans – we’ve decided to do everything possible to stay in our house indefinitely. The yard is large (an acre) but we have found that we can afford to hire help with it. It looks great right now since we have hired a company to do the lawn service and flower bed upkeep – many thanks go to Warren’s brother, Bob, for his assistance with that.
There is a lot of work to be done inside the house, but it’s all the kind of stuff I love to do and have already purchased many of the materials we need to finish the projects. I’ve just never found the time to work on them before. We can also afford to hire some help with the work when necessary - like having the second story solid oak floors finished professionally. Dale and Celeste have a good reference to offer. It’s really something we can’t afford NOT to do!
All of the work that needs to be done is essential to the resale value of the house and for our enjoyment prior to that time. We want to have everything done before we put the house on the market. The biggest job, we both agree, is to get rid of all the “stuff” so we can live and work in the house; and, of course, we would have to do that whether we stay here or go elsewhere. In any case, this is not a good time to sell, and we can’t imagine where we could live that would be less expensive than staying right here. Then just maybe, by the time we are done with everything, the housing market will have recovered along with Warren!
All this discussion came up because Warren noticed how contented I was all day yesterday just being able to get the house more presentable for the visit from our family and the German guests. He really enjoyed seeing me so happy. By the end of the day I had one of those “aha moments”.
Yesterday evening, while watching the kids and grandkids enjoy the house they had all grown up in as our family home, I knew that I really do want to stay here. It was the first home Warren and I bought and it’s been our only home for 32 + years. It just holds too many memories to give it up before it’s absolutely necessary.
They say a picture is worth 1000 words so I’m adding a few pictures from the extensive collection that our German guest, Andrea, sent to me by e-mail today. I will add them to our photo journal shortly. Caryn has taken a couple shots of Warren with his improved skin color. I will ask her to e-mail them to me so I can include one tomorrow.

In her note Andrea said, “I love your garden!! I could rest there for several weeks, just sit and look!” So could we, but make that “years” instead of “weeks”!
 
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