"Sue Saddened Wife" Continuation Thread

Hello ladies, Quincy, Ted, just dropping by to say hi and to wish you all a miracle. Don is over the diarrhea and eating three or four good meals a day. He looks awful and is very fatigued still. We are taking five days off in a couple of weeks and going to one of the islands for a little R&R. The radiation appears to have done a lot of bone marrow damage and lysing. Ferritin is high, CEA and NSE tests show great elevation over normal. PSA is up. He is very positive though. I worry about the NSE and that awful incident last year where a met pressing on the abducens nerve was causing him terrible head pain, and to go cross-eyed. His eyes are now tracking normally and no more headaches. Still a concern.

Sue, I just read your last post. The nurse actually said that? %$@& her. How dare she. Don was given a prognosis like that 8 months ago. I saw it on the chart and then that disgusting radiation doctor at the cancer agency started babbling on about cremation. They are just heartless fools who should never have entered the medical "profession." I have spoken to too many people in my 34-year medical writing career (maybe 20) who have said that they have seen more than a few miracles, including people walking out of hospice. So never give up hope. These are doctors and nurses' own experiences and observations.
Also, I will email you a link to an excellent You Tube healing cancer meditation/visualization. It is very reassuring and relaxing. You both need that. I think that nurse you spoke to should join ranks with the fool who made the cremation remarks. They are both more suited to being undertakers. That said, I really think you should let your daughter know what is being said here. It needs to be shared with someone close.
Just running out and will email you later. Hugs xox

Post Edited (Moonlitnight) : 5/27/2015 2:31:19 PM (GMT-6)

Sue, reading your post is heartbreaking, and i can only offer you my sympathy, it must be so frustrating. I wish i could offer more. I am Dave's age, and still fairly new to this whole thing, and i can only imagine how you both feel.
I wish some peace for you both, and pray that somehow, things will improve.

Report that nurse and get a new one on your team! Do we need to get some ninja suits and sneak attack? We'll in my case it'll be a fat ninja suit if the even make em but I can do crazy and and am recruiting others! We can have a side trip for the ladies respite trip and all work out our frustrations on his care team!

I've lived that... Not easy. It made the week of anniversary and pet scan he'll for some reason...

I agree about the stress.... And your team should be helping you have less not adding...

Can you get a shower chair and one of those handheld shower nozzles? They have some nice ones here in a store on sale for $5. I'll send you one if you like... Don't give him a chance to object just do it quietly and say nothing so he can't protest?

Thinking of you!!!

Sue, I am holding you in my thoughts today. We were told that shortness of breath could be due to low iron. Meanwhile, Don's ferritin is over 2800 but his iron levels are very low. Today, I am trying to find a haematologist without a 4-month waiting list. I got an email from his oncologist asking What's up? I responded with Does anyone really care? I then explained the ferritin issue. That was five days ago. We want Don on an artesunate IV but cannot get this until the ferritin is normal. Am also emailing the RadOnc.

Dear Sue, we are all saddened for you. This is the most stressful time of your life that you will ever face. Ever raw emotion comes into play, hope and despair, hate and love, anger and acceptance, all gushing out, making it impossible to cope. You seem so particularly strong and willing to fight for your husband; a lot of us would have given up in the face of so many insensitive medical personnel.
I have been in your shoes, with my first husband where I had to fight with my in-laws who decided they should be alone with their son near the end and weren't speaking to me by the time of the funeral because I wouldn't leave the hospital, and whose head nurse decided that death would happen that day, but it didn't, and with my younger sister, whose husband decided he needed to leave the hospital when my sister's death was near, and my parents needed haircuts right then. End of life struggles bring out the worst in some people. So I know the emotions that you are trying to cope with.
It is very difficult to realize that your devotion and caring and love can't surmount all. We come from a culture where we think our positive thoughts can change the forces of nature. But cancer has a mind of it's own. Your Dave is doing the most that he can. It is not he that is weak. Cancer is an ugly, smelly wickedly evil disease, without any remnants of pretty and pink. We can fight, but we also have to accept.
This is very hard for me to write, because nobody wants to destroy your hopes and dreams. But as wives, we need to be ready. Some of the advice of the doctors is right. Make sure you have power of attorrney. Know where your marriage license is because you will need it. Sign end of life rescesitation orders, because if they perform CPR, his next crisis will be worse. Get your papers in order, and know where they are. Get home care as much as you can, because you need your strength. In Canada, we have all kinds of services that will get you the equipment to keep your husband in your home as long as possible. Just know!
And about eating. that is such a big deal, because they just can't and we know if they don't they can't get better, and they try, but it's impossible, and we beg and plead, and they get sick and throw up, and it all is so hopeless. Much like anorexia, but with cancer, it's the disease which controls.
You are amazing in your constant search for the best for your husband. He is very lucky. I think of Rob who died alone, and I wish he could have had someone like you at his side.
Hugs.

Hi Sue, let it be known that I believe in miracles. Of course, they don't always happen but there is no reason why you should not believe one might come along for Dave. I have had to put up with the doom and gloom crowd in the health "profession" over and over. Fortunately, I have had some balance speaking with a couple of US doctors and our own naturopath, all of whom say you should never, ever give up hope. Of course Dave and Don could leave us next week, but then so could I, or you, or anyone else. It has been demonstrated time and time again that thoughts affect outcomes, even with cancer, which to my way of thinking is not some separate and evil entity, but a part of one's own body just misbehaving in a frightening and dangerous way. My mother passed from breast cancer. She and we never gave up hope. My best friend died from melanoma, aged 38. Another close friend had stage IV breast cancer and kicked it using only natural methods. Another chose to have chemo 20 years ago and is still around. All cancer stories have different endings and many have rallied at what appeared to be the very last moment. So if you want to carry on fighting and believing that Dave will rally, then do so. That is your right. I would never allow anyone to get away with the words you have heard. I have a letter going to the new head of our cancer agency about the despicable and entirely inappropriate discussions that took place before Don had Ra 223. Sending you love and light.

"God has a plan, and he will show you when the time is right so keep that faith and fight on!" I am not religious, although I believe in a higher power, but to this remark of Krissi's I say, "Amen!" Sue we all are rooting for you and Dave, in a big way. xx

Moonlights post reminded me of my mom, who also passed from breast cancer 35 years ago this week, at age 54. When things got really tough she would always say "where there's life, there's hope" no matter what the doctors told us. And she lived longer than most of the geniuses in the medical profession expected her too.

Hope you and Dave have a better day today, Sue.

@Pratoman, "Where there is life, there is hope" was my mother's expression as well :)

@ halbert. This is so very well put > "...and doing the one does not deny the possibilities shown by the other." Just an excellent post, which I have copied and pasted and printed. Maybe I'll use it with my wellness clients one day, and attribute it to you.

Your last sentence is particularly relevant today as in the national daily's Lives Lived section is a story of a "perfectly healthy" woman of 61 who just literally dropped dead of a heart attack. She and her husband recently retired and had experienced a few wonderful adventures travelling. He is, naturally, devastated, and wrote the piece as a tribute to her. One never knows. The only certainty is the present.

@ BeeJane such a heartfelt post as well. You have seen a lot. So very sad.

Post Edited (Moonlitnight) : 5/29/2015 9:44:27 AM (GMT-6)

Yesterday was a bit better for us , Dave seemed a bit better. I am still waiting for megace to perk up apetite. We heard from radiation oncologist office yesterday and we go for 9 am Monday. The gp Dr called at supper time and said Dave should have blood transfusion so hoping to get that done in Kingston as well on Monday . So will have to hit the road for 6:30 ish if they type and cross blood then after radiation oncologist they could do the transfusion . Still one more Drs office to hear from the respiratory about shortness of breath. It would be nice if radiation on back got zapped and that some how helped with the breathing. I wonder if just a decrease I the mets by those radiation doses would just help . You never know.
Yes all our lives we have kept our paper work organized. Last year on May the 2nd we lost Daves Dad and doing his final paper work has been more than just a head ache, We are almost at point of getting a clearance certificate from revenue Canada. We miss his Dad alot and I think we did everything we could for him, We went every 3 months to Winnipeg and spent 5 days with him. He was in a nursing home but we usually suprise visited even though it was supposed to be Winnipegs number 1 home. We looked after his suplies, clothing, hygiene products as well as making sure he had news papers and his sports channels . He was always just like my Dad as well. When our daughter was young it was family reunion and Dave couldn't get the time off from the paper mill so Dad , Corbie and I traveled to Calgary for that and went I to the States for a few days. We had a great holiday ! We dtove a Ford Lynx that had no air conditioning through Billings Montana with a temp out side of 107! It was so hot that Dad jumped in the pool at the hotel and I had to dive to the bottom to retrieve his glasses! My daughter wasn't herself and when we got home found out she had viral pneumonia. Any ways he was the kindest man I the world and there wasn't anything that Dave or myself wouldn't have done for him.Any how I better start our day .last of the flowers to plant , its sunny so far . Maybe Dave will come and enjoy some of the sunshine, Hope all of you have a great day!

Sue, your palpable relief and joy in another sunny day touched my heart. I am relieved your guy is feeling a little better. You are in my thoughts... xx

Thanks Mel. Things are not good here at the moment. Ferritin levels get higher and higher (2800) while iron is low - a sign of severe tissue damage and associated inflammation. Thanks Ra 223! (Comment from our radiation oncologist, "Well, I guess that didn't work, did it?" She's never been keen on it but we pushed for it.) We are waiting to hear confirmation for a trial of two PD1 inhibitors at Fred Hutchinson. Only a Phase 1 though. I have been given a long list of immuno/PD1 inhibitor trials from EmergingMed, who do all the prequalifying for you. No charge. The trial list I have is primarily Pacific NW as this is what I requested.

Sue and ladies, hope you had a great Saturday. More sunshine today. Love and light.

Post Edited (Moonlitnight) : 5/31/2015 8:38:33 AM (GMT-6)