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  #76  
Old 06-02-2009, 08:12 PM
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Default Re: Cancer Cachexia

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
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Old 06-03-2009, 07:16 PM
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Default Re: Cancer Cachexia

Wednesday, June 3, 2009 7:05 PM, EDT
Arnetta and Warren Journal

Warren was down 2 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!
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Old 06-04-2009, 07:21 PM
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Default Re: Cancer Cachexia

Thursday, June 4, 2009 6:02 PM, EDT
Warren & Arnetta Journal


Warren was up 1- 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
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Old 06-05-2009, 08:04 PM
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Default Re: Cancer Cachexia

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!
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Old 06-06-2009, 08:05 PM
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Default Re: Cancer Cachexia

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!
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Old 06-07-2009, 11:39 AM
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Default Re: Cancer Cachexia

At the thread initiator's request, his two threads in this category have been merged and all cartoons deleted.

Buzz
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Old 06-09-2009, 01:16 AM
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Default Re: Cancer Cachexia

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!
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Old 06-09-2009, 01:30 AM
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Default Re: Cancer Cachexia

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.
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Old 06-10-2009, 01:03 AM
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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!
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Old 06-10-2009, 07:33 PM
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Default Re: Cancer Cachexia

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

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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!
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Old 06-11-2009, 04:41 PM
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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!
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Old 06-13-2009, 03:45 AM
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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!
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Old 06-14-2009, 02:07 AM
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Saturday, June 13, 2009 6:23 PM, EDT
Arnetta & Warren Journal
Warren weighed in at 139.5 this morning – up 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!
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Old 06-14-2009, 11:34 PM
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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!
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Old 06-15-2009, 08:52 PM
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Monday, June 15, 2009 7:20 PM, EDT
ARNETTA &WARREN JOURNAL
Wow -142 pounds – up 1 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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Old 06-17-2009, 01:25 AM
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Tuesday, June 16, 2009 8:29 PM, EDT
WARREN & ARNETTA JOURNAL-


Warren’s weight was stable this morning - right around 142 pounds, but he hasn’t had the best of days today.
It seems that Warren is developing a pattern – one day of feeling good and having some energy followed by a day of feeling very tired and needing rest and more sleep. However, the overall trend seems to be upward. Warren felt sick last Wednesday and better on Thursday; that’s when he first tried the exercise bike and the walker. Friday he felt pretty rough again and needed rides everywhere. Saturday, he felt good, walked (with the walker) everywhere and used his stationary bike. Sunday, he was tired and quit walking by noon. Monday – yesterday – he felt good, walked everywhere and rode the stationary bike. Today he was very tired again and napped quite a bit, BUT even though he reports being very tired all day, he has walked everywhere (except to the lab at Henry Ford for his blood draw) and used the stationary bike for more time than ever before. To make that long story short, Warren seems to be more able to push himself each day even when he’s feeling fatigued!
I had a push of a different kind today and I really needed it. Celeste came over to help me rearrange the family room. In addition she is, thankfully, helping me to rearrange my mind. After Celeste carried a plethora of items out to the garage, I was amazed at the beauty underneath it all. I now have a newfound love for neat and uncluttered and I don’t miss any of my former treasures. The family room is beginning to look like something out of Better Homes and Gardens. It even looks twice as large but cozier - it's amazing! Warren and I both love it! It will be our model for the rest of the house.
I think I may end up having the world’s largest and longest garage sale! Our garage will fill up quickly at this rate.

Being right on the corner of Farmington Rd and Old Timber, we’ve always had a wonderful location for a big sale. In fact, when we clean out our garage people stop and try to buy things! Hopefully some people will want to join us to bring stuff over and help man it.

What I can’t sell of our stuff I will have picked up. A lot of the stuff is really nice – I just have tooooooooo much nice! I have always hung on to stuff for when we would have less office stuff and also for when we inherit Dad’s apartment (an event I’m definitely not ready for). As of today, I’m through hanging on to everything except, of course, faith, family and essentials for living. Warren feels the same way - the watchword is simplify!

I hope you all like the picture of Warren that Caryn sent today. He is holding the Get Well Bear our granddaughters gave him when he first got sick. He also has his arm over his faithful "Dogger" pillow. Both "pets" have brought him comfort just as all the thoughts, prayers, cards and messages people have sent his way have lifted his spirits on many occasions. Thank you all for everything!
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Old 06-18-2009, 01:37 AM
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Wednesday, June 17, 2009 9:04 PM, EDT
Arnetta & Warren's Journal


Warren’s weight held steady at 142 this morning. Unfortunately, there has been a break in the pattern I noted yesterday. Today was the second rough day in a row. There wasn’t much walking, if any, from the very beginning. Then I had to ask Warren a question concerning the business. That was enough to exacerbate the shortness of breath and cause tremendous pain in the abdominal area. The immediacy of the reaction was very apparent and it sparked much discussion and permanent resolve on both our parts.

I regret to inform everyone that Warren is no longer able to do any work of any kind. Just the mention of any business concerns sends him into a palpable panic. He still feels very badly that his illness has caused him to “let people down”. That's my Warren. Without exception, he took a tremendous amount of pride in doing his best work for everyone, and he has often worried more about others than he has about himself. In fact, in a few cases, he seemed to care more than the client did. After much discussion, I believe I’ve managed to convince Warren that it’s the cancer that let people down – not him!

Whatever questions I can answer, or whatever information I can give regarding the business, I will be happy to. But if I don’t know the answer, I can no longer bring myself to ask Warren. I told him that he is very much alive to me, to the family and to all those who love and care for him; but from now on, as far as the business is concerned, he is already gone. Life would have had to go on if the cancer had already taken him – it will need to go on when he is this incapacitated and fighting for his life. Warren is grateful for my resolve. I will and I must remain firm and strong for his sake.

Every once in a while reality sinks in and I realize I'm not in a nightmare - I'm awake, this is our real life, and it may get far worse before it gets any better. I start to panic and feel as if I'm going to cry, then I give it over to God and just ask him to carry us through another day.

Today has been one of those days; but God, family, our faith and the help and prayers of my wonderful family and friends – all of you out there - are tremendous blessings. Those are the things that get us through each and every day. Thank you for being there!
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Old 06-18-2009, 02:40 AM
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Arnetta wrote
Quote:
Every once in a while reality sinks in and I realize I'm not in a nightmare - I'm awake, this is our real life, and it may get far worse before it gets any better. I start to panic and feel as if I'm going to cry, then I give it over to God and just ask him to carry us through another day.
My dear, I feel like this every day. My healing prayers go out each night for each and every one of God's children fighting this horror called cancer. Bless you both.
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Old 06-18-2009, 08:28 PM
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Thursday, June 18, 2009 6:25 PM, EDT
Arnetta & Warren Journal


Warren’s weight dipped a bit this morning but only pound to 141.75. That may be due to the fact that he opted for one of the highly desirable egg rolls with duck sauce brought for all of us by our friend, Celeste, rather than his higher calorie tube feeding. He enjoyed the egg roll so much that we figured it was a pretty good trade-off. He still enjoyed his dark chocolate later in the evening, too.

I’m sorry to say that Warren’s increase in strength from a couple days ago still hasn’t returned. We haven’t given up hope, though. He’s resting a lot today in hopes of feeling better later. We’ve decided it’s best for him to listen to his body and not push himself beyond what he feels most comfortable with. We’d rather have an incremental but steady increase than one day on and one day off.

As of this afternoon, after several unsuccessful trips to the lavatory and some self-diagnosis, we think we know what is causing Warren’s pain. He is blocked up again - nothing has moved through him for the past few days and now the exit is blocked. I gave him a dose of Miralax to wash down two Phillips tablets with lots of water so hopefully by tomorrow he will get some much needed relief.

This blockage problem seems to occur when Warren tries to eat “real food”. He misses food a great deal and longs for the simple pleasure of eating some of his favorites. However, it’s just not worth what it seems to do to him so he has again sworn off trying to consume any food by mouth. He would rather live on Ensure, formula and melt in his mouth chocolate than go through this agony again.

I’ve spent the day dealing with business issues without input from Warren except for the one job within his purview that he knew we had committed to and felt prepared to deal with. I wish I could say that particular job went without a hitch – the right hand of the IRS never does know what the left hand is doing. We have come to expect that. That’s one of the major reasons why tax work is so stressful. Warren has done his part on his computer and I will try to handle it from there.

Thank you to everyone for your words of wisdom, love and encouragement regarding my near melt down yesterday. Some of you have encouraged me to go ahead and cry out loud – very loud, in fact. I actually tried to do that last night (just medium loud) after putting Warren to bed, but it didn’t really happen – not at all loudly anyway. With Warren at one end of the house and Dad at the other, it’s hard to find a private place around here at any time where I know I won’t be heard, and it’s impossible to find much time to go somewhere else far enough away during the day. A few silent tears last night seemed to help me, though, so I’ll allow myself that luxury a bit more often. God always seems to be there to dry the tears as quickly as they fall.

Thanks for checking in again. Have a great evening and God Bless you all!
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Old 06-18-2009, 08:34 PM
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Old 06-19-2009, 02:21 PM
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Default Re: Cancer Cachexia

is it a peg tube with a slow drip? maybe he can take his feedings & meals together. that's the way i gained after an ilness.

hugs to you both, & my best to you!
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Old 06-20-2009, 12:28 AM
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dansdiamond dansdiamond is offline
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Default Re: Cancer Cachexia

Friday, June 19, 2009 9:28 PM, EDT
Warren & Arnetta Journal


Back up to 142 today!
Warren’s transportation by wheelchair and self propelled walker was mixed today. That is a step up. He did a few rounds on the exercise bike, too.
There has been no luck in the lavatory yet so Warren’s intestines still hurt but he feels that relief may be close. We hope for tomorrow. We always give him three colace capsules every day but we’ve added doctor recommended Miralax for the past two days and will again tomorrow. Then I want to go to every other day on the Miralax. The next day we may need to resort to dynamite instead!
As for me, I’ve been too busy today to think about crying, screaming or yelling. That release will have to wait til another day and then I’ll try some of the helpful hints you’ve given me. I like the idea of using the car as a sound chamber. I also like allowing myself 15 minutes each day for a “self-pity party” before getting on with the rest of my day.
Besides being an extremely busy day, today has also been a very long one. I couldn’t sleep past 5am because of worries about business issues so I got up and worked on them. I made good progress, so I do believe I will sleep tonight. I’m very sleepy already, in fact. I almost dozed off over this keyboard a moment ago.
Tomorrow, I’m actually looking forward to mostly just folding laundry, watering plants, doing household chores and taking care of the cats and my star patient. Then I believe I will feel less like crying because those are the things I want to do - especially the lattermost one!

Have a great evening everyone and God be with you all!
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Old 06-20-2009, 12:32 AM
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Default Re: Cancer Cachexia

Quote:
Originally Posted by luvs View Post
is it a peg tube with a slow drip? maybe he can take his feedings & meals together. that's the way i gained after an ilness.

hugs to you both, & my best to you!
Luv-I e-mailed your Quote to Arnetta. Everything is appreciated.
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Old 06-20-2009, 08:57 AM
arnettamae arnettamae is offline
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Default Re: Cancer Cachexia

Hi Luvs,
I finally got a few minutes to explore what is going on at NCT and I wanted to reply to you. The tube feeding is a slow drip. There are days, though, when Warren has difficulty digesting even the liquid food because of the pancreatic tumor activity, so solid food seems to cause him a lot of trouble. He does occasionally try to eat some soft foods in addition to the liquid formula and later usually feels as if it has caused problems. We have found that it's easy for him to let treats such as a bit of dark chocolate melt in his mouth and that helps his desire for tasting. We will keep trying different things. His weight was up just a smidgen more this morning! Thanks for the tip - suggestions are always appreciated!

Love,
Arnetta Mae
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Old 06-20-2009, 12:06 PM
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Default Re: Cancer Cachexia

Dear Arnetta,
My dad took me and my mom on a similar journey and I am on a different one with my mom right now. There are always good days and bad days. Do not be discouraged when Warren needs to sleep. My father needed a gastric nasal tube for a time but that, too passed and he wound up back to eating. The steroids enabled him to gain weight but also dried up lung tissue so it was a double edged sword. When he was in Hospice he had several requests: house special fried noodles from his favorite Hunan Coventry restaurant, rolls and butter and Hersheys' chocolate. My biggest concern was his comfort and pain management. Yes, pulmonologists can be rather abrupt but my dad's doc was grateful to be wrong because he survived two more years than this expert claimed he had. He also said that I couldn't take care of my dad at home but I did. I will keep you both in my prayers. Try to remember to take care of you, too, Arnetta Mae. That was where I failed and got sick. It is a long road back to health and wellness best not to let the stress takes it toll unchecked.
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