Sherry's Story


14th January; 2000
Deidre,
Thank you so much for caring enough to reach out.
At 50 years old, I was diagnosed in October 1998 with malignant pleural mesothelioma. I've been on both a spiritual journey and a traditional one to find help for myself. Until your site though I didn't find anything written from the heart; rather, everything has been clinical.

I didn't cry for over a year but your site helped me let it out. I'm scared but not terrified and try to live each moment to the fullest. Your husband was a lucky man to have someone so filled with love. My husband is wonderful but it's harder for him than me sometimes.

Currently I am in the pain and suffering part of my disease. It seems that I can't even spend a few hours without focusing on my health and panicking.
Thank you for helping me get back in touch with my heart. If you are ever in upstate New York, I would love to meet you.
Bless you, you're a saint.
Sherry.


18th January; 2000
Thank you for your kind letter. I don't know when I was first exposed to asbestos, but I think that I was in my early twenties. My main symptom was difficulty breathing. My doctor wasted no time in telling me that he recognized what I had. He was draining the fluid and as soon as he saw the colour he told me to go home and put my affairs in order. He said that he usually didn't give such advice but that there was only one possible diagnosis.

My heart dropped. All of the doctors that I saw (and they were the best that I could find) unaminously told me that there was no hope. I had chemotherapy. They opened me up to remove my lung but said that I was too far gone and sent me home to die.
Well, that was 14 months ago and somehow I'm doing all right. I've been receiving alternative medicine (homeopathy, etc.) and something seems to be working because many of my tumors have shrunken.

I'm sorry that you don't expect to travel outside of New Zealand and I don't know if there's any compensation available to you, but here in the States the asbestos industry has to pay everyone who comes down with mesothelioma. Not that it comes close to compensating for your husband's life but perhaps there's something like that there. If you need help finding out about this, I can ask a lawyer here. He's a specialist in mesothelioma cases only and he might know if there's someone like him over there.
Lots of luck to you and please feel free to ask me anything that you want.
Sherry


22nd January; 2000.
Deidre,
Thanks for your offer to write a story about my experience. It is something that I've been thinking about. The trouble is, I get too wordy and it would become too long, but I am interested in doing something like that.
Thanks for your site address again.
How funny to hear about hot weather. We have snow and ice and the TV and radio advise people to stay indoors and for those who must go out, to be sure to carry extra blankets and jackets in case of car failure.
Talk to you soon.
Love, Sherry.


13th February; 2000,
Dearest, kindest new friend,
Thank you so much for the letter about Cancell. I haven't heard of it but I promise to be an expert by Monday. That's the most exciting thing I've heard since being diagnosed.

I work with a man, Jim(------). He's not a doctor, but rather, he runs one blood test on you to check the balance of your immune system. After determining the ratio of your T cells and others, he provides a nutritionally balanced set of supplements and custom diet. He sends test strips with which to check your progress. There are no drugs involved! Rather he keeps your immune system boosted so that your own body can do the fighting. It is not easy. Some of his requirements are very strict, but though I live 250 miles away from him, he has helped many people I know.
My friend Debbie had lymphoma in 1984 and was told that nothing could be done. She's been fine for over 15 years, and credits Jim with a lot of it.
I went to our local health food store and met a woman who had breast cancer. She said that she had been treated by him for more than ten years and has been cancer free for most of this time.
He's not discovered a cure; rather, he has developed a way for people to co-exist and fight the disease. He has declined to have TV specials done about his work because he's uncomfortable with the attention, but he's quite well known anyway.
Please feel free to send this (and any other email) I send to anyone who might be helped. Yours is certainly the best site that I have found and I would be proud to be included in any small way.
Thank you and God bless you.
Sherry.

17th February; 2000
Hi there,
Sorry it took so long to get back to you but I was waiting to hear from Jim. He said that he would rather not have his number posted on the internet because he does everything by referrals and the people who send them to him, know who he can help and who he can't.
You can certainly post the rest of the letter if it's not too late.
Hope you are well. Your letters cheer me up enormously.
Sherry.



4th March; 2000.
Hi, Deidre,
I'm sorry that I haven't gotten back to you but I've mostly been in New York City. Just got back this past weekend and have been catching up on all that I've missed.
The last report that I got from my meso oncologist is that the tumors have grown a bit but Jim (the immunologist) thinks that it's scar tissue, which I do seem to manufacture in large quantities.
In any event, all is well. Jim has me taking eight different supplements as well as an immune system tea and something is working because I feel much better than I had.
I even bought ice skates while I was in New York and I hope to use them a lot.
I've been speaking with Dalinda. She seems quite frightened and I wish that I could help her.
Doctors in the States seem committed to scaring us with death proclamations when they don't know anything at all. I would have been dead at least three times if they were right about everything!
How are you doing? I haven't gotten on to your site recently because every time I get on the net, I get kicked off. Seems I live in a somewhat rural area with insufficient phone service. We're getting a high speed line this month, so that should remedy it. But it takes four or five calls just to get my mail!
I'm going to run. Take care and keep doing your good work. You can't imagine how much you have done for my spirits.
Sherry

4th March; 2000
Hi, Deidre, it's Sherry again.
I've just finished reading a book called "Co-Existing with Cancer or You Thought Living with Your In-Laws Was Difficult" by Jack D. Ruda. The back cover of his book reads partially as follows: "I was told by a number of doctors that I would never live long enough to see any grandchildren. Because of a rare form of cancer, mesothelioma, I was given a short life expectancy."

He was diagnosed in 1991! I spoke to him today and he is in good health!!! I have given him your website address
He said that he goes around the country lecturing and he published his phone number in the book so I assume that he wants to hear from and talk to people about this.
I just saw the web site with my name in it and I must say that I write better than I thought.
Thank you and I hope that someone can feel a little better after hearing about me.
I hope to hear from you soon. Your notes mean so much to me.
Sherry


5th March; 2000
Hi, Deidre,
I will gladly send you Jack's book, don't worry about the cost. I already own it. I will ask him about putting his story on the web, but I'm sure he will say yes. I forget when he's leaving on holiday but I will check and if he's still here I'll contact him.
Ice skating is wonderful, I could do it every day. I'm sure my ice skating is nothing like what you see on TV as I'm still struggling to stay up. I took my first lesson yesterday from a woman who was once the Olympic gold medal world champion from Switzerland. The nicest thing she said to me was that I haven't developed any bad habits yet and that she can help me. It was such fun! Next week I plan to go to New York City and skate with my friend's five year old daughter. Not bad.

I know this will sound strange, but a lot of good has come from my being diagnosed with mesothelioma. It taught me to stop and enjoy each moment to the fullest.
I met some wonderful people and I found your internet site, which is by far the most useful thing on the internet about the disease.
Here in America if you search the net for information about mesothelioma, you find mostly lawyers and a couple of pages about different medical studies. Yours is the only one written by a human and yours is certainly the only one offering compassion.
I don't cry often but your site helped me to let it all out, and I felt so much better for it.

There's a woman, I think her name is Margie Levine, and she's past her ten year mark. She went for both the traditional and alternative treatments, and isn't sure what worked. She has also written a book, but I don't have it any more (I gave it away to someone who needed it). I'll be glad to get you her email or phone number if you wish.
That's it for here. Keep smiling and being a source of hope and love. You're much needed.
Love, Sherry


25th April; 2000
Thank you for the prayer and thought. I wanted to send it back to you but the mail program won't let me forward that message for some reason.
How are you doing, my friend? I'm well, I think. I've finished my court case where I found out that I am one of the only "living meso plaintiffs" as the court refers to me. It was hard meeting the other one, who is much sicker than I am right now.
I think about you often. I've tried calling Jack Ruda but the number has been busy each time.
Please let me know how everyone is doing. I've looked at your site a few times, but haven't seen anything new about Jim. I think he called Jim though.
I hope to hear from you.
God bless.
Sherry
Have you heard from Jim or June?


Hi, Deidre,
Whenever I get your mail, it's always dated one day ahead. Today is the 25th and your mail is dated the 26th and it starts my imagination going. Wouldn't it be great if you really lived in the future and you could tell me what to expect...

Yesterday is the one year anniversary of the last time the doctors told me that I had just a few weeks to live. They opened me up one year ago to remove my lung and closed me without doing the procedure. I was too far gone, they said.

It's important for us all to realize that when a doctor gives a prognosis like that, he is just being a fortune teller, and not even a good fortune teller.
They cannot predict our outcomes any more than they can predict the stock market.
When they say "three months," (or whatever number), they are basing it on past probabilities, not on fact. There's no such thing as medical certainty, at least not in this disease.
The last time I saw my oncologist (four months ago), he told me that it would be a matter of weeks before I couldn't breathe independently. I went to my regular doctor two weeks ago and he told me that my oxygenation level was better than expected even for a healthy person my age.

I've been studying the mind/body connection and am convinced that one of the reasons that I'm doing as well as I am is because I can imagine and contain my disease. When I began this, I thought it was rather silly, but the more I read, the more I become convinced that attitude is an important part of the wellness/disease process.
I've read several books that have helped me and I learned to meditate and visualize the cancer. I really believe that these are helpful and I'd be glad to give you the names of the books if you think that would help anyone. There are also books by cancer survivors that generally give coping strategies that help.
The thing that helps me most, I think, is having loving friends and family to share my fears with. I would love for you to publish this on your website but if you don't, please do stress to everyone that sharing your pain and fear eases your burden. It works for me.
I also read that there's a study about the effects of talc pleurodesis (which I had). That's the surgery where they "cement" your lung to stop it from repeatedly filling with fluid. It seems that a lot of people who undergo this procedure do better than expected. It seems to be able to arrest the disease in some of us. I don't remember where I read it, but I know that I found it through a web search by typing mesothelioma AND pleurodesis.

I check my web mail every few days in the hope of hearing from you and I'm so glad when I do. Try not to be too discouraged and if there is anything I can do or offer any hope to anyone, please let me know.


30th April; 2000
Deidre,
I read your whole letter but all I can think of is how you must feel, going for your own tests. I want you to be healthy. I don't know how old you are, but when I was in my 40s, I noticed that I had a little trouble getting that last breath -- only it was more when I was relaxed than at any other time. I asked the doctor about it and at the time it was nothing to worry about. I hope and pray that all it is is that you're finally learning to relax again.

"Kitchen Table Wisdom" by Remen is a book of short stories, mostly about cancer patients learning how to accept their illness. She wrote a follow-up book that I didn't think was as good.
"Tuesdays with Morrie"  is very popular here. Mitch Albom (I think that's how you spell it) writes of his teacher's last days and it's very moving. It helped me to accept my own mortality and not be so scared.
Of course there's Jack Ruda's book which deals with our disease.

I don't know if I mentioned this but if I did, please don't repost it, although you can if I didn't tell you.
They're looking into a surgical procedure called talc pleurodesis as a way to put mesothelioma on hold. There's a study going on here that I'd be very interested to see the results of. I had that operation. It stops fluid from accumulating, which is apparently how the disease progresses. Mine was a year and a half ago. It's a piece of cake compared to the other things they offer.
Please, please, please let me know the results of your tests.
Love,
Sherry


1st May; 2000
Hi, my friend,
I've been thinking about you a lot and hoping that you are okay. They say that we don't look at our anger about death until we begin the process of healing so I hope that means that you are on the path to peace.
You can certainly give my address to anyone you want -- for any reason you choose. I trust your judgment completely. Do you know that yours is the only site that's not written by doctors or lawyers, which to me makes it the only one without an agenda?
It looks like money wouldn't stop me from visiting you. My lawyer got me the second largest settlement ever from one of the companies. Of course I don't have the money yet but I do have the promise. And of course I'd rather have my health but at least I get to live the rest of my life in a way I never dreamed possible.
It's been over a year and a half since I was diagnosed, can you believe it? I can't. For now, I'm enjoying every moment. My life has become holy and I treasure it. I even love doing the things I used to hate (like washing the dishes after dinner) because I'm so happy that I can do them.
On a heavier note, if I get upset, the first thing that happens is I feel it in my breathing. This may or may not be because of the mesothelioma, I don't know. But don't jump to conclusions, it could be anything.

Thank you for your concern but my house is never empty. Some friends will be staying here (sort of a vacation for them) and they'll be taking care of our dogs and cat. Woodstock is sort of a famous community here in the States. My house is set into the mountains and you can't see any other house or even hear cars go by. It's a piece of heaven and my friends look forward to staying here.
Anyway, take care and God bless. Don't forget to let me know about your tests.


2nd May;2000
Deidre, I think of us as friends sharing our experiences. I wish that I was qualified in some way to counsel people but I never even finished college.
Jack Ruda is on the lecture circuit here in the States. He goes around the country helping people with cancer. He's what we call an inspirational speaker.
I had looked at your entire site when I first found it but since chemo my memory's not as good as it used to be and I guess I forgot that you're a few years older than me.
If New Zealand is like the States, you probably won't get results for up to a week. I stopped going for the tests because I couldn't bear the wait and they had nothing to give me anyway. It was as if the test was the disease. Once I realized that they were only guessing most things anyway, it seemed pointless to get the scans.
I'm going to go on my treadmill now. My breathing is a little down generally, going up stairs and all, and the treadmill seems to bring my endurance up.
Talk to you soon, I hope.
Sherry


13th July, 2000;
Hi Deidre
Sorry I haven't got back to you but I've been real busy. My husband was ill but he's alright now.
It was a real scare for a while.

I got a good report from the doctor. Didn't get an MRI but my oxygen intake level is 97% on my bad lung and 98% on the good one There hasn't been any fluid for a long time.
I'm going to write you a longer letter , but I have to run.
Take care.
Love
Sherry


1st September; 2000
I looked at Jack's site and all I can say is, "Go, Jack!" Isn't he inspiring?
As for me, I've gotten a bad CAT scan and have to re-evaluate what to do. I have six new masses, all large, and the ones I already had show some growth.
I'm coming up on my two year mark though, and like Jack, feel pretty good.
I'm still very hopeful. This Sunday morning, my closest friends are coming for a prayer circle, something I have never had before.
I'll keep in touch with you about that.
Have you ever heard from Jim or June?
Keep going with your good work. You can't imagine how much it benefits someone like me to read it.
You are an angel.
I may look into Jack's radiology, I'm not sure. I'll let you know what I do.
Sherry


8th September; 2000.
Hi Deidre,
Well, I started chemotherapy again yesterday. I have a lot of confidence in my doctor and he said that I reacted wonderfully to it the last time. Here in America he's called the "Grandaddy of Mesothelioma" by other doctors. He's a kindly older man (about 70) and he knows everything traditional and alternative that's out there. I'll let you know how it goes.
In the meanwhile, all is well at home. I'm optimistic that a short treatment of chemo will help again. I don't know if I told you, but my last report showed significant growth - in fact, I had seven new masses and all my old ones had doubled or more in size.
Keep in touch, I'll email you soon. I'm glad Jack has his site up,
Sherry.


9th October; 2000
Hi, Deidre,
Well, my chemo regimen is two weeks on, two weeks off, so that means that I have two free weeks a month. They haven't taken any pictures yet, so I don't know how I'm doing. I'm pretty unsymptomatic still, as long as I don't try to go skiing or hiking or anything in a high altitude.
So what's the weather like in December? I will have a CT scan done in November and I hope that I have something to celebrate!
As for Dalinda, I hope that her balance problem is just a side effect of one of her alternative treatments.
Have you heard from Jim or June?
Also, anything new from Jack Ruda?
I'm going to go check your updated website now. Write soon.
Love,
Sherry


1th October; 2000
Hi Deidre,
I hope that your questions don't mean that you are afraid for yourself but I'll answer them to the best of my memory.
I had gone to see my daughter in Utah, where the altitude is much higher than where I lived. I was okay when I was standing still but if I tried to climb even two or three steps, I had to rest for a long time and wait for my breath to come back. I figured that by the time I got home, it would fix itself.
Instead, it got worse. I would walk a few steps and feel as if I wasn't getting enough air. I would have to rest just going from my bed to my bathroom (just a few feet of walking).
When I took the train to work, I had to allow 15 minutes just to get up the steps (including resting). I didn't tell anybody.

Finally, I went to a doctor who said I probably had bronchitis or pleurisy or something. He gave me antibiotics. They didn't work, of course. Then the chest x-ray. The technician said that I had an awful lot of scar tissue on my lung and asked me what kind of surgery I had had. (The answer was NONE.)
Back to the doctor who told me that they would have to drain my lung. They removed ten or twelve liters that first time and the doctor who I had only met that day, said, "Listen, I'm going to do you a favor. There's only one thing this can be. It's very serious. By the time they confirm your diagnosis, there's a good chance you won't be around. Go home, put your affairs in order and if there's anything you want to do, do it now because in a few weeks you're not going to be able to do anything.

"Dumb Greek bastard," I thought to myself.
Well, they sent the fluid for biopsy and it came back meso, which I had never heard of. I didn't believe it. I was still having trouble breathing though and they drained another eight to ten liters. This time I insisted that they check me for everything on earth. All the tests came back meso.
Several surgeries later, even I couldn't deny it. I began to have sore throats, pain in my shoulder and rib cage, difficulty catching my breath, etc. IT TURNED OUT TO BE ANXIETY. The only symptom I had really was difficulty breathing.
All the rest was in my mind. It was fear doing a number on me.
I suppose that the fluid had been building for a few months but I don't know for sure. I remember walking through New York with a friend of mine and not being able to keep up with her. That was in June. By October I had a diagnosis.
I hope you're not concerned for yourself; if you are, know that your mind plays lots of tricks. I've just passed my two year mark (since diagnosis) and probably almost two and a half years since the fluid began and I feel healthier than ever.

I'll pray for you; everybody's prayers worked for me.
Love,
Sherry

I was not sure if you had received this news of Sherry's passing.
I hadn't seen it listed so thought I would post it in case you wandered why she wasn't on anymore.
I shall miss her terribly as I feel as though I have lost a very good friend.
She was so positive with everything she did and I always looked forward to her mail.
Deidre vanGerven.

Sherry A. Strumph Levit, 53, of Shokan, NY died on Monday, April 29, 2002
at her home after a courageous battle with mesothelioma that drew the admiration of many.
A "Fire Island hippie," she was the confident of and most able assistant to the late Peter Morrison, Esq, Attorney General for the State of New York and the Founder of Transcript Associates, a media services company in Manhattan.
Her love, generosity, and celebration of life was an inspiration to her many friends and relatives.
Surviving are her husband Hiram; her daughter Kristin Hooten; her sister Eileen Forte; and brother Joseph Strumph.
Relatives and friends are invited to attend a celebration of her life at The Tibetan Budhist Monastery in Woodstock, NY on Wednesday at 1:00 PM.

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