AAAARGH!

[Luke and Margaret]

Luke now has multiple kidney stones. They probably formed because he is on fluid restrictions in an effort to reduce stress on the heart so it can mend. However, with the night sweats the restrictions were probably too much.

He’s been in pain and vomiting a lot; we saw the naturopath who gave him something to relax the area and soften the stones. I hope it works and those puppies pass soon.

Of course, all of this means a delay for the Vidaza. The docs are so darned hesitant to give it in the first place because of the potential for impact on the heart. In the end, if we want to persue it, I imagine we’re going to have to make a decision and sign off on that.

Yesterday the naturopath gave Luke a long hard look and asked if he has been doing any exercise. “The drugs can only do so much, you have to help them along”. Luke hasn’t been helping things along. He swallows what I bring him and waits. And waits. He’s been hellishly sick off and on, but he has not had the desire to push himself and aid his own recovery even when he has been up to it. Yesterday it dawned on him that if he had, perhaps he would be in a better position today.

I have left the business of arising from his couch and walking a very short walk every day up to him. This isn’t something I can do for him. The desire and sense of obligation to participate in his own recovery has to come from within. This has been a recurring theme for us. Unfortunately you can’t borrow other peoples’ self discipline.

But between you, me, and whoever else wants to know, I am feeling very angry about it all. Time to go to the gym and burn of a bit more adrenaline!!!
Margaret

[Caroline]

Margaret.

It is frustrating, confusing, saddening and every other negative word I can think of. I think I understand how you feel. My Mama sometimes tends to do the same thing with her health. As a doctor told me 2 days ago, “She is cognitive, an individual and an adult. SHE is the one who is ultimately responsible for the outcome of her disease, NOT YOU !!! You can only be a facilitator, not her Saviour. DO NOT take the responsibility for another’s decisions.” This piece of advice helped me, Margaret. I hope it helps you too. I have been feeling like I have to make my parents’ health right again. I got pushy and angy when things did not go according to the ‘plan’. In fact, she called me a bitch and told me to shut up in front of 3 nurses and then did not speak to me for 2 days this week while Dad was laying half dead in a hospital 30 miles away. Since the Doctor sat me down and basically ordered me to CHILL, I feel more at peace. I do what I CAN do and I leave the rest to my dear parents. I pray for the things that are out of my hands but I don’t feel responsible and guilty anymore. That was eating me alive and I was becoming very ineffective in my estimation.

Peace and Blessings Margaret,

Caroline

[patti]

Margaret,

I’m sorry. It’s hard when we can’t make our husbands do what they need to do. The good news/bad news is, they are men. God made them that way. They can be stubbornly willing to work themselves to the end to take care of themselves or they can stubbornly do nothing to take care of themselves. Mine unfortunately, falls into the refusing to take care of himself. So I can completely sympathize. It’s worse when they have a serious disease and won’t take care of themselves. You are right to walk away from the couch and tell him he has to do it himself. But it’s hard. And it hurts. And it’s very angering! Hang in there. The gym is a good place to go.

I just finished researching kidney stones for a close friend who just passed some last week. Do you have the book, Prescription for Nutritional Healing? I highly recommend it. One thing it said was that 1/2 of fresh squeezed lemon in 8oz of water every morning will not only help to pass kidney stones but will also help prevent them in the future. It’s an easy and cheap thing to try. Can’t hurt. It’s also supposed to help the pain.

Hoping for a better day for you and Luke.

Patti

[karenkay]

Margaret,
I empathize with your plight. My father takes NO PART at all in his well being. I have to agree with the others that it is smart to not take that responsibility on, because it is a defeating task.
I admire you (and so many others on this forum)so much, I feel very unqualified to say anything, except that I continue to keep you in my prayers.
I certainly hope that Luke feels better!! My sister in law suffers from kidney stones, I am going to tell her about the lemon juice idea that Patti shared.
Good for you for continuing to go to the gym!! Keep strong and God blessings,
Karenk

[Ensnee]

I’m just adding to this general topic,since I’ve left several personla messages for Luke & Margie on their blog.

I have mixed emotions about the current trend of “patient, heal thyself.” While it’s definitely a good thing that patients are participating more in their treatments, I feel that there is point where, if a patient doesn’t improve “enough” or is not “positive” enough, or even dies, there is an aura of blame on the PATIENT. I don’t think that a patient should be labelled as wrong if he or she decides to “give up.” Yes, it’s wonderful & inspiring when someone is tenacious and positive and full of humour, because there is no doubt it’s easier and more pleasant for everyone involved, but often sheer willpower will not do the trick. I think we as loved ones have to respect the patient’s outlook. Let’s face it, being threatened by a deadly disease is DEPRESSING & FRIGHTENING. It’s very hard to be positive when you feel like hell. I hate to think about it, but if Hans decides one day that he’s fed up with all the chemo, I have to accept that. It’s his choice. I still cannot imagine what it must be like, to be staring my own death in the face.
If I can help him come to be at peace with his own struggle, I will do it. That’s not to say I sit back and let things just happen. I think he’s been hiding away too much and not seeing his friends. I’ve taken actions to improve that situation. I encourage him to take supplements and try to find out what will help. This kind of situation is different for each one of us in a lot of ways. There are an infinite number of personalities interacting. We all have to feel our own way along.

I hope we can all be kind to ourselves and each other, and know that we are going to make mistakes!

many hugs to you all,
Esme

[Luke and Margaret]

Hi Esme
I’ve read what you said very carefully, and am thinking about it.

I keep thinking though, that it is early days here in many ways. There is a lot of distance to be covered in terms of progression of the disease, treatment side effects if we can ever get that far, etc.

Right now he has been waylaid by kidney stones which are not causing him pain, and (I blush to write it) constipation. The two things together are causing the nausea. The remedy is fairly straight forward, and once this is resolved I know he’ll feel a lot better.

I get frantic when the pit falls and side lines of his illness become such overwhelming stumbling blocks. What on earth will he do when the slogging gets really hard??

Its a constant struggle for me to know when to push, when to back off. Its actually easier when he is in hospital. There, the doctors and nurses provide lots of encouragement for my efforts to get him moving. He’s also motivated because he hates the hospital. Once we’re home, the motivation lags.

My sister said something interesting tonight – “he just doesn’t want it.” The psychologist we see pointed out that he talks as if he has “one foot in the grave”. He says it is his Germanic gloom and doom showing, but I’m not sure its a cultural thing at all.

I’m not sure what the role of a caregiver is under these circumstances. Its time for another appointment with the psychologist. We both need something, and that’s a good place to begin. We may not both need the same thing, I’m beginning to see.

Nothing easy about this, is there?
Margaret

[Sandy L]

Hi Margaret,

You said it all in the last sentence. Sorry that Luke is not feeling well. Maybe tomorrow he will pass the stones and he will feel better and things will look up. It is funny when Mike is sick (vomiting) I feel for him. When he tells me that he is nauseous and continues to eat . I ignore him. I too am tired of hearing that he is N………..! I remember feeling guilty about feeling that way, but it something that you can’t see, so my empathy was very thin.

He will come to his senses soon. It is just a rough spot. Hang in there. We are all here for you and know how hard you are trying to make things better. (Don’t we all wish we could) I told Mike several times that he needs to change his eating habits and make his body healthier. He says ” I do everything you tell me.” It would be nice if he did everything I tell him but he does not.

Hope to hear from you tomorrow and that thinks are better.

[Ensnee]

Margaret — Germanic gloom & doom! Ah, yes, I know it well.

No, nothing about this is easy, you’re so right. We have been through a lot of ups and downs since Hans was Dx in June 2004. However, I can pretty much trust Hans when he chooses to stay in the “germ-free zone” of the bedroom, or doesn’t want to get up much when in the hospital — when he’s feeling better, he does get up and start doing stuff. He likes to be busy if he feels up to it. And he’s not a whiner, he’s pretty stoic.

I REALLY hope things get moving again soon for Luke.

many hugs,
Esme

[CarolineG]

Margaret.

Just know that you are not alone. You are doing your best and that is all that you can expect from yourself.
And that Germanic gloom and doom….personally, I think it is in the blood. We are Austrian so I speak from experience. I see it in my family and in all of their friends.
All kidding aside….I wonder if it is really a cultural attribute or if it is a societal one. My husband’s family is Canadian and alot of them behave like that too….no German influence there. I even notice that my children will find the worst in a situation before they notice the tiny sparks of positivity.

Try to have a nice day Margaret, despite the rain and warm temperatures. All will be covered in a clean, white blanket soon just like it was here last Thursday. Wasn’t that weather something?? I had to drive from KW to Guelph in it on an open country road. WHEW !!! THAT scared me but I couldn’t show it.

Bye for now,
Caroline

[Luke and Margaret]

LOL! I’m Dutch. We tend to find the ridiculous in everything! And if we can’t find it, we make it. However, I do know what you mean. Luke’s dad tends to high drama, and while Luke is Canadianized, he sure did get the angst gene.

The weather in Toronto is actually pretty darned nice today. I drove to Barrie last night in a rain storm, and it wasn’t too bad. I went to a wonderful Christmas program. In the first five minutes I felt emotion absolutely overwhelm me – if I had let it flow I’m sure I would have had to leave, so stepped on all of that REALLY hard. Christmas is going to be a very difficult season this year, I think.

If you have snow, you keep it there. We had ours last week.

Well, we’re off to the hospital again. This time they want to give him intravenous fluids. Which means more sedentary time, less liklihood of passing those stones. I may rip my hair out.

Then again, it is falling out of its own accord, so may not need to invest the energy.
Margaret

[CarolineG]

Margaret,

Most of our social group are Dutch people. You’re right. They are a fun bunch, always seeing the positive and ridiculous.

I am glad to see that you keep a sense of humour through all of this nightmare. I figure that when you stop laughing…you start crying.

Christmas brings emotion out of me at the best of times. This one is going to be rough, I know that already. I am knitting Opa a soft hat and scarf to keep him warm when we go to our doctor visits during winter. I get choked up just working on it in the evenings with Christmas Carols playing. I can only imagine what kind of a mess I will be when he opens it on Christmas Eve. I have not cried in front of him yet.

I LOVE SNOW!! I don’t want to keep it, I will share with you. hehehe In my opinion (which is different from everyone I know), today’s weather belongs in April and May !!! I could live in the Yukon and love every minute of it although my family would make me live there alone. It is pouring here today. Peter is finally putting away our garden furniture. hehe A wee bit late eh? We’re behind on the outdoor chores this year but with very good reason. I should probably log off and go out and help him.

I hope that the intravenous fluids help Luke.

Wear a hat so that your hair stays on your head.

Blessings,
Caroline

[JulesH]

Margaret,

I am a 68 year old male on VIDAZA since 9/04 (every 4 weeks). I have had several bouts with kidney stones. In August 2004, a staff infection did severe damage to my heart. Doctors did not hesitate putting me on VIDAZA. In July 2005, I had open heart surgery to receive an artificial aortic valve.

Doctors said they were able to do this because of the success of my VIDAZA treatments. I am still on VIDAZA every 8 weeks, but I have no symptoms of the CMML which had me receiving weekly blood transfusions before the VIDAZA.

I played 18 holes of golf this morning and also last Saturday. I have a tee time for Thursday morning at 7:00 AM.

Before the heart surgery I could not walk more than 30 feet.

[Ensnee]

Jules, what an amazing story you have! It’s just what Margaret and Luke need to hear!

cheers,
Esme

[Luke and Margaret]

Jules, I could just hug you!

Luke was readmitted tonight. There’s some kind of puzzle. There may never have been kidney stones. There may, though, be a spleen change. Luke’s platelets have dropped to 17.

Seeing the oncologist first thing in the morning. We need an action plan very quickly. I’m putting the Vidaza in the trunk of my car now.
M

[Ensnee]

Margaret, I’m praying for Luke and you. I hope you can get a handle on his stomach problem soon. He must be abolutely miserable.

many, many hugs,

Esme

[Author]

Posts