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New Directions


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Dear friends,

"I don't want cancer to define who I am," Jane said shortly after her diagnosis. "I am more than a cancer patient."

Jane stayed a human being throughout her battle with the disease. There were times she got angry--times she screamed at me out of frustration and impatience. Those were the times I knew I was talking to the cancer and not my wife. She asked me once about how I stayed so cool when she got angry at me--why I didn't scream back. I said that to her--and she nodded and smiled. She knew what I was talking about.

Not that there were not times I wanted to scream right back at her. There is an anger and frustration on the caregiver side of the equation as well. But her burden was heavy enough and I would not add to it.

"I don't want cancer to define who I am." Those words echo down through the last 15 months--because I have so far failed to live up to them. Cancer did not define who my wife was--but it and grief have very much come to define me. When grief, or my struggle to come to terms with it, does not have me by the throat, my struggle to understand this disease and find new ways to raise awareness about it and fight it consumes me.

"I am more than a widower," I want to scream at the world. "I am more than a small soldier in the war against this cancer." But that is too often what I have become: a man lost in grief, a man lost in the fight against the disease that took half his soul away. I want vengeance--but my chance of achieving that vengeance is vanishingly small.

The problem with cancer--among other diseases--is that it does not just destroy the person who has it. It often destroys, in subtle ways, the lives of that person's loved ones--as it has sometimes been doing with me.

I lost 20 pounds from the day Jane was diagnosed until the day we buried her on the hill next to her mother. But that was the merely one of the physical effects of those days. The mental and emotional damage was far greater. I no longer have the patience I once had. Frustration is a daily companion. Where I once was truly living, I am now--to quote T.S. Eliot's Murder in the Cathedral--too often only partly living.

That has to change--or the cancer will have killed us both.

That does not mean the work I am doing is going away. I made a vow--and I keep my vows.

But it does mean I have to let go of vengeance and become mindful again. It means I must relearn patience. It means I must let go of anger and embrace love--not romantic love, but the love that is encompassed by the word caritas.

Then I will be more than a widower--more than a small soldier in this war: I will again be a human being--and truly alive.

Peace,

Harry

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Dear Harry,

I under stand completely, what you are talking about, and the feelings you had as a care giver. It is a very, very hard task to take one, to take of 24-7 and also see the other part of your soul slipping away. I had to do that for many years. It really took a toll on my body, as you well know. There were times, like you out of Pauline's frustration, it is only human to lash out at the one who care the most for you, but I never ever, returned it in. I would take it until it was over and the Pauline would realize what had just happened and try to apologize for doing it. Before she could speak a few, words I would be right there with my arm around her, tell her I love you and everything is fine, that I know it was just the MS, talking to me again and not my love of my life.

My drive is not to battle MS, there is a lot of people out there doing that now. I do donate some money, not much, but more when I get a job. Instead I turn my focus on becoming a nurse to help other in need. That is what is calling me now. After all the years of taking care of Pauline and all the different medical things I learned to do along the way. This has became my passion now. So far so good. I have a long way to go yet, but I know that nothing will be able to stop me except myself, and I have, way to much drive and determination to quit.

This is my front line soldier in my life, to excel at nursing, and help as many people as I can for ever as many years as I have let in this body.

God Bless, my friend

Dwayne

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Dear Pam,

That inner peace, and comfort, you talk about, I have truly found that in my soul. I miss Pauline as much as ever, but I have made peace with it, because, I know it was not in my hands. There was nothing I could have changed, or done different. It has taken me months to find it, but I do have it now. A great Peace and Comfort inside. It has help me so much after I saw Pauline's face that day in recovery. After that, it was lit a fire was lit inside me. Now it burns like a roaring blaze of fire of Peace Comfort. I still cry, after all we are human, and it is good to release those tears, when needed, I was crying in church last night, as pastor prayed for others who have a life ending conditions. The memories, just came flooding back, and my eyes were like water falls, but that was ok, after I felt better, and once again the peace returned. I was at complete comfort.

God Bless

Dwayne

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Harry,

Once again you've voiced words that many of us are most likely thinking.

You are so right in saying that cancer destroys not only the patient, but also the people around them. Our lives are changed in so many ways when we are faced with this horrible disease and lose our loved ones to it. At one time I really believed that you could survive if you were able to catch the monster in time. When Lars was told in Aug. 2009 that the scans and MRI showed he was cancer free, we thought we had a new lease on life. It took less than 2 months for the cancer to come back and he succumbed to the disease on Dec.11, 2009.

There have been many other people that I was close to that have died after they were CANCER-FREE.The fear now that I carry is that my sister-in-law and 2 brothers in law will die regardless of the treatment. So it is really worth all the hell that people go through for an extra month or two? What quality of life is that? I thank God every day that Lars was not able to have chemo or radiation for his cancer (bladder). He had one kidney removed in April 2009 and the chemo would have destroyed the other one.

So regardless of who you are...Cancer changes you and your way of thinking of the disease.I donate as much as I can, but only take it directly to the Cancer Society or Palliative Care. That way I was told, there are no admin. fees and the full amount is given.

Harry, I must also mention that the one I e-mailed you about had the test done and she doesn't have NEC. Thanks for your info on your Walking with Jane site.

Lainey

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When I was walking for the Leukemia/Lymphoma Society recently and found that the only shirt they had left was one that advertised being a survivor of the disease I took it realizing that yes I am a survivor of this affliction, surviving the loss of my gpa, uncle,who passed from this disease, and the affects of what this disease did to Mikes mom, and what this did to him......Yes I am a survivor.....not from what the disease has done to my body, per say, but from what it has done to my life.....Dave

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Dave,

Are we really survivors? I think the suffering and pain of losing a loved one to cancer affects us more than we realize.

I wish that I was able to say that I believed a person can be cured, from what I've learned and seen of the disease, the only positive I've gotten out of it is that a person with /cured of cancer is that they know what they're going to eventually die from. If we are lucky enough not to get cancer we won't know what we'll die from.

I know this sounds harsh and mean ..just my opinion of the disease. The doctors and drug companies aren't going to tell us there probably isn't a medication that will cure us. If they did, would you send them your hard earned money? I know I sure wouldn't, so they keep us believing that with our money, they will find a cure. Find a cure for cancer and watch the drug companies go broke. But I believe that's the case of many diseases.

Lainey

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Lainey, Yes I see where you are coming from but yes I feel that we, those that are left behind are survivors of this horrible disease, all forms of cancer......and all diseases.......and yes have questioned many times as a nurse what the drug companies are allowing to be done, all for $$........for that matter the entire health care system in this country......is profit driven, with constant, needless tests run on the pt for $$$ ......very unfortunate....Dave

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Dear Dave,

I understand about a money driven system, but ultimately it is up to the patient and or the family to decide if they want to go a head with the expensive treatments or not. Pauline had 2 uncles. Both we diagnosed wit pancreatic cancer, the first one went all out, and suffer for 6 month from radiation, kemo, sick all the time, and passed in the hospital. Her second one decided to do nothing. He enjoyed life for 5 months and 1 week before his weight drop so much it was hard for him to get around, outside the home. He staid home, he passed at home with all his family at home and like Pauline had, Hospice for the last couple weeks to keep him comfortable. He passed in peace. Who is to say which one is right. They both wanted to live. One suffered way to much, from the treatment, that did not extend his life. The other one wanted to live, but also wanted to go out on his own terms and he did, he went in peace, not much pain.

God Bless

Dwayne

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hellow it has been 5 years that Im trying to find a new direction.You do have a way to say what we all feel.I wish I could expres myself but the lagege is not helping me. thank for coming here. My old friends know that I lost my love from cancer and as you say it has killed me also. love from far away TENY

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The cynic in me believes also that a cure for most diseases could be available but the profits are so huge...I know for sure that should I develop a life threatening disease...there will be no treatments that are worst than the disease. I told my doctor that already...no chemo, radiation, surgeries that to me look like prolonging with pain and discomfort and no quality of life. I also know that my brother has had cancer three times, did the surgery at age 28 and again in his 40s and later in his 50s and is still here living a high quality of life. He is now being kept alive on a drug that causes a lot of side effects....in all those years he has helped a LOT of people so where is the line? I think it is each person's choice to decide what they wish to do and other people's responsibility to respect the choices. Mary

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Hi all..

This is now the torment that I live with the cynic in me. My spouse was also cancer free after his first radiation and chemo treatment only to find out two months later it is back.. another round of surgery radiation and chemo. Our bodies are not met to continue to pump poison to it and survive. So I struggle with what killed him...the cancer or the treatment? I am cynical about the medical profession and not getting straight forward answers. Are we being used as Guinea pigs to further their cause knowing the outcome isn't good with the treatment? I have so many questions about it all. God bless you Harry for supporting your cause and honoring Jane because I can't run fast enough away from it right now. Maybe that will change in time. But for now if it was me with the disease that I saw my husband go through I would opt out and live the reminder of life without the so called treatment that wasted him away to nothing. So many questions. I will try to find a more upbeat way to honor him.

Blessings to all

blizzarding in KS

Becky

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Mary,

My family also knows that I will NOT go through the chemo or radiation or any medications that will interfere with my time on this earth. Life is too short to kill ourselves while trying to save ourselves.There are many alternative things I believe that can be tried,they may not cure the cancer, but they can keep it at bay for a period of time. I've watched a close friend go through the conventional treatment, only to have the cancer come back within 3 months. She followed the alternate therapy, and though the cancer won,her last few months were much less painful and she was less sick.

I'm happy that your brother has been able to keep the disease at bay, but at what cost to his body? What other organs are being attacked?

As Becky said to Harry "God bless you Harry for supporting your cause and honoring Jane because I can't run fast enough away from it right now."I feel exactly like that.I truly wish that I was strong enough to do what Harry is doing,but because of the crap we were put through ,I too,can't run fast enough to get away.

And Dave, yes we are survivors in the sense that we lived through having our loved one die from the disease. As a wife though, I still go to bed at night and see the disease taking over Lars' body and brain(Meds). I will never get those images out of my head.

My whole attitude toward alot of diseases has been changed,not only because of our situation, but because of watching many other people close to me suffer from cancer.

Lainey

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Yes, Harry, I admire what you are doing. I thought about getting on the wagon for Alzheimer's cure/prevention but I just can not do that at this time. So carry on....you do it well.

Mary

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Excellent article. I learned a lot about this when Bill was so sick. I know that if 911 is called, they WILL resuscitate unless there is a DNR bracelet ON the person's wrist and papers signed by 2 doctors to back it up. My MD knows what to do and I know he will do it and I have papers signed sealed and delivered to be sure. Bill and I both had these as neither of us ever wanted to live on life support or do anything to prolong life when in reality life is ending. Between all of this and transplants and so much more, we deprive people of their right to die a natural death. The system decides....whew! Thanks for the great piece, I am printing it out for friends and keeping it on my pc for future reference. Well done.

Mary

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Hi,

Our Doctor, Pauline's then mine for many years are an amazing man. He is undoubtedly the most caring Doctor I have ever met. His wife was diagnosed with a life end disease around the same time as Pauline was, but hers is much slower, it took away her skill to talk and walk, but her mind is as sharp as a tack. About 3 years ago Pauline ordered some art supplies, she liked drawing in colored pencil, along with the order they sent her a basic water color paint set, so when Pauline had her next DR visit she gave to him for his wife. The next time she asked him how she like it. Well he the DR already is an oil painter himself and a very good classical pianist, no surprise there, but he told Pauline that his wife took those water colors and started painting everyday, more abstract, her own way. He, even took her to the Poconos for an art class weekend. I saw him 3 week ago I asked him about his wife and he said she is doing ok, and what she has is an auto immune disease, but she will life for a long time.

One of Pauline's wound nurses went to high school with his daughter, it really is a small world isn't it. I know I have and Pauline had the best Doctor possible.

God Bless

Dwayne

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