Copper treatment

[Barbara K]

Hi, Chirley and Birgitta--Just wanted you to know that I'm sitting here (in the US midwest) rooting for you both. I admire the support you offer one another and others.

Loved the constipation story, btw. The same thing happened with our youngest child years ago. Ended up in the emergency room in the middle of the night when we were traveling over the holidays. An x-ray is done. Doctor comes in, addressing our child: "So, how long has it been since you went doo doo?" Boy was my husband ever annoyed at our kid.

Take care,
Barbara

[Birgitta-A]

Hi Chirley and Barbara!
Thank you for the kind words! I was 67 yo at dx 2006 and this makes it more easy for me to accept my "limitations" as Chirley wrote. I am thankful for every day.
Kind regards
Birgitta-A

[Chirley]

My weight loss is now a real problem. My BMI is now 17 my weight is 47kgs (around 105lb, I think) and so I had a gastroscopy today. It shows a normal stomach and oesophageal anatomy but unfortunately the oesophagus isn't working due to my Neuro problems. So as everyone else was eating their sandwiches and drinking their tea/coffee post procedure I was offered lime flavoured jelly.

I've been told to restrict my diet to protein enriched fluids and supplements.

This disease sucks big time.

[Birgitta-A]

Hi Chirley!
Too bad that you can't keep your weight! For persons that love good food supplements will soon be difficult to drink.

My younger sister who passed away with colon cancer 2008 got a big pack with supplements at dx 2006. She couldn't drink them and gave them to me because I don't care about what I am eating only it is good for me.

You have probably heard that supplements should be served cold. Hope you find some kinds of supplements you will be able to drink.
Kind regards
Birgitta-A

[Cheryl C]

Chirley - so sorry to hear this news. You are a few kg lighter than me now so I know you must be getting quite thin. I hope you find some delicious supplements which you can look forward to consuming every day!

Coconut oil is a healthy fat and is very good for you if you can handle it - perhaps add it to a supplement. See http://www.coconutresearchcenter.org...h%20Center.pdf

[Chirley]

Not much to report. Weight reasonably stable...now 46kgs. I'm having occasions when I can't straighten my legs at all and they are stuck for hours in a contracted position which means that I'm unable to mobilise at all at those times. I just take increased doses of diazapines and cross fingers it works and so far, so good. I assume one day that will cease to work. I'm lucky I don't have a lot of pain (yet).

I caught the community bus to my physicians office today and was going to leave my Christmas gift with his secretary (he works Wednesday at another hospital) but he was there and I had to give it to him in person, which I really didn't want to do. It's the first time he's seen me in street clothes (I usually wear very baggy pyjamas) and I think he was a bit shocked at how thin I really am. I could feel him feeling my ribs as he gave me a hug. At least I think the hand made shortbread and the bottle of Cab Sav went down well and Glenys (his secretary) seemed to like the French Champagne.

I went past the hospital canteen and the daily special was a bacon, lettuce, tomato toasted sandwich with a cappuccino for $5 (with full table service on proper China crockery) so I decided to try it out. Well, I managed a quarter sandwich and half a coffee but it was a nice change from protein supplements. Call me stingy but I asked for a doggy bag too.

36 degrees C here today with thunder storms predicted. Normal summer.

[Birgitta-A]

Hi Chirley!
You and I belong to the patients who are thankful if our symptoms are stable and we don't expect any improvement. I hope that I can continue with 2 units of blood/week and that my WBC can be OK with Neupogen injections. The platelets are decreasing but they are not so low that I need platelet txs.
Kind regards
Birgitta-A

[Chirley]

It's strange isn't it Birgitta, how we come to that place in our minds called "peaceful acceptance".

A month or so ago I became angry with my physician for the first time and raised my voice at him because he wouldn't (couldnt) give me a life expectancy. I just wanted an approximate number of months etc. he refused to speculate. I told him off, I said I didn't mind dying but I just wanted to know when! That was the first time I saw him look sad, when he couldn't give me any idea.

He just said it was time to enjoy myself and do things while I can and to not worry if it might make me sicker because it won't shorten my life by much. So that's what I'm doing.

So, I've booked that cruise...I may not make it...so what! I may take that cruise and find I'm still well enough to take many more, who knows!

Each day I wake up and I can still get out of bed and live an independant day is a bonus. I look over and see my dog in her basket next to my bed and I've got to be happy, how can I be anything else?

I can tell from the way you write that you too have that "peaceful acceptance" while at the same time you live each day to the full and appreciate every day that you are given. I hope you are given many more.

[Birgitta-A]

Hi Chirley!
Yesterday I was invited to my eldest daughter's family. My grand daughters - 17 and 15 yo - were asked to choose among my not very expensive jewellery. I had among other things an opal, that I bought in Melburn many years ago. My younger daughter's son will get my deceased husband's things.

I think your doctor is right when he can't tell you about life expectancy. Doctors are not God and should not try to give that kind of info.

Hope you will be be able to live many independant Days !
Kind regards
Birgitta-A

[Chirley]

Birgitta, I have been trying to sort out who is going to look after my two cats and one dog. I've decided to leave a bequest to the Animal Welfare League to take in and re home my older dog and cat together (with a Trust Fund for them to pay their Health Insurance) and to leave my younger cat (and Trust Fund) to my brother because he has a farm (cat Nirvana) and he lives by himself. My brother has owned a cat before, it's not as if he doesn't like them. They would both benefit. Not that my brother will appreciate it at first

I feel more settled now that I've decided on what to do. It was weighing on my mind.

After the Christmas break I will go to the Solicitors office and set everything up. I'm sure my Solicitor will be rubbing his hands in glee thinking of handling three different Trust Funds for animals! Probably thinking I'm some kind of weirdo. Too bad!

My old cat wants my lap so I'll sign off.

Bye

Chirley

[Cheryl C]

I think it's wonderful that you are ensuring care for your animals, Chirley. Our cats have always been family members and I would have exactly the same concerns.

I reckon with your determination you will get to enjoy that cruise! I hope so.

[Birgitta-A]

Hi Chirley and Cheryl!
You know that now I only have one wonderful persian cat - Minou who is 19 yo. Her mother Felicia died two years ago 18 yo due to kidney problems - very common in old cats. My daughters know that Minou is much yoo old to accept another home.
Kind regards
Birgitta-A

[Chirley]

I think I better point out that in relation to Minou my "old" cat and dog are just youngsters. My dog is 12 and a half and my cat is 11 and a half. My young cat is just over 3.

That's why I'm insisting the older cat and dog are re homed together. They even share the same basket sometimes (if the cat will let the dog in).

As for me...on my good days...I suspect I'll keep going for a long time because so far I've overcome some major health problems and I'm still standing (sort of).

I was even once told that I would probably not survive the night due to severe pneumonia and heart failure (I refused intubation/ventilation) but I'm as stubborn as you can get.

I'm a realist. I plan for the worst, hope for the best, live each day as it comes and dream of a future.

[tom30]

Originally Posted by Marlene

The whole copper/zinc balance shuts down my brain. About four years after John's treatment, an doctor who specializes in "functional medicine" ran his red blood cell mineral elements as well as a copper/zinc profile. The red blood cell analysis showed low-normal copper and high normal zinc. While the blood serum showed low zinc and normal copper. Even the doctor didn't know what to make of it. The copper/zinc ratio, which I understand is an important factor in all of this, was high.

Copper is just recently identified as a possible link to MDS so it does make sense to try and correct it. I don't know if they checked the copper/zinc ratios in the study they did a few year back or if they just looked at the copper serum levels.

Hi Marlene, Happy Holidays, I would appreciate your help in letting me and other know what you currently have John taking in the way of supplements and your other holistic approaches. I started taking zinc and B6 recently along with some other supplements then decided to see who was taking the same on this board and came across a few of your old posts. I value your past research and would greatly appreciate knowing the dosage and brands you use. Zinc is a real puzzle as to which form to take.

[Marlene]

Hi Tom,

I will have to work on putting a current view together. Things are always evolving. I will create a new thread when I do.

The p-5-p form of B6 is the best form of B6 to use. NOW or Country Life have worked well for me. Bio-active B complex formula will have it too.

Zinc picolinate is a good form to take. He uses Thorne Anti-Oxidant formula that that the zinc in it. Look on herb.com to see all that's included. http://www.iherb.com/Thorne-Research...2&sr=null&ic=1

The "orotate" form of zinc is supposed to be a very usable form. Haven't tried it yet.

[tom30]

Marlene, thank you for the reply, and the way you put it as 'Things are always evolving' is a relief. I feel the same way with new information and pieces to a great puzzle always coming in.

[Chirley]

Well, I'm in hospital for my usual copper top up. While I've been here I started vomiting again so I've had another gastroenterology review.

My stomach has twisted shut again and I have to have an operation to place a tube through my abdominal wall into my small bowel to feed me. After I am given enough nutrition, the plan is to do a complete gastrectomy and attach my Oesophagus to my small bowel. Unfortunately, the doctors aren't sure I'm strong enough to survive the surgery so it's touch and go at this point and I'm even considering whether I even want to proceed any further.

This is major surgery and because my life span is limited any way I have to consider whether I want to spend a chunk of my remaining time in hospital. It's getting to crunch time but the human spirit seems to keep fighting....

[Sally C]

Dear Chirley,
I am so sorry to hear of these latest setbacks. You are such a brave and caring soul.
I wish you peace in the coming days.
Take care,
Sally

[Cheryl C]

Dear Chirley, I'm really sorry to hear this. Thank you for all the encouragement and help you give on this forum - I appreciate the way you always see the positive side of any situation. I'm sending you a hug, and am praying that you will have wisdom to make the best decision for your future well-being.

[Birgitta-A]

Hi Chirley!
How terrible that your stomach has twisted shut again! To not be able to eat and feel the taste of the food leads to lower quality of life.

Hope you soon will be strong enough for the complete gastrectomy and that they can attach your Oesophagus to your small bowel!
Kind regards
Birgitta-A

[Marlene]

I'm so sorry to read this Chirley. I am always amazed how you pull yourself through these very difficult situations. We will keep you in our thoughts and hope for a good outcome.

[Barbara K]

Dear Chirley--I'm so sorry to hear this bad news. My thoughts are with you as you face these difficult decisions about your medical care. Warmly, Barbara.

[Hopeful]

Chirley - Thinking of you and wishing you wisdom, strength, and courage.

[Chirley]

I haven't updated for a while so I thought I'd check in.

I had my nasal feeding tube replaced with a Jejeunal feeding tube which immediately got infected with pseudomonas bacteria and I'm back in hospital for the second time for intravenous antibiotics for the infection. I've been here for a week so far this time. Luckily my white cell count is pretty good and staying at around the 2.5 mark so, fingers crossed, it doesn't drop. No talk of discharge at this time though.

It looks as if my cruise might be in jeopardy but I'm still hopeful that I will be well enough to go. If I can't go I have two friends who can take over my tickets at short notice.

I've spent probably five of the last six weeks in hospital and I'm due for more copper infusions in a weeks time so even if I get out of here soon, I won't be out for long. I have to wonder if this is the start of how my life is going to be and whether this is the time to sit back and think about my treatment options or whether this is just an unfortunate bump in the road and life will improve. It's hard to look at life objectively when you are actually the one living it.

[Cheryl C]

So glad you have posted, Chirley. I was beginning to get worried about you.

I'm really sorry that you've had such a tough time lately. You are right about the difficulty of being objective when it's all happening to you. I hesitate to give any advice since your current situation is so different from mine. However after reading your email I wonder if you should see if you can get through this infection and your next copper treatment before you make any decisions about further treatment. I can imagine that you will be feeling quite depressed about being in hospital so long this time. I'm sure I would be!

Hang in their dear girl. You are in my thoughts and prayers.