Jill's Story

I am so very proud to know this beautiful person.
No matter how she is feeling she still gives so much love,
support and knowledge to all who need her help.

I am a better person
through knowing her,
Love you Jill

Someone asked for my story and I promised it.  I hate writing long stories, but this is a very short history of my cancers. My story begins December 25, 1973,when I went into hospital to have a tumour removed from my uterus. Previous to this time, I had been bleeding for a couple of years . I heard of Hinsdale Woman's clinic and that they did great things with women who had problems. I met with a great doctor at the clinic, who wanted me to try a new douche from Japan. It was to arrive at a certain pharmacy in a big barrel, and there was only going to be two places that would be using it. It finally arrived and it was great. I'm sure many of you all have experienced vaginal infections and all the different ways to treat them!!!!!!! The douche worked. That was probably in the fall of 73. Then I began to haemorrhage Had a D and C. waited for pathology, Called my doc. "HMMM" Strange he said. I'm going over to lab to check this out. I asked if it was cancer and he said that is what the results are saying, but he didn't believe it and thought the douche had changed some cells in the vagina. Lab results came back Endometrial Interstitial Sarcoma. Later MD Anderson told me that was the same thing as LMS My doctor was to be out of town and he wanted one of his partners to do the hysterectomy. They operated and the doc said "you've had a very Merry Christmas, we got it all Size of a grapefruit. BUT, there were some spots on the ovaries" (they left the ovaries, because of my age and I that would need the hormones) that they thought were endometriosis. Wrong!! it was Leiomysarcoma. I then had 3 months of radiation to destroy the ovaries, rather than cutting me open again. I had an Egyptian radiologist who said "Pray to what ever God your have, because that is all we have for you." As he held up a small file, he told me that this was all of the patients that had ever had this disease and gave me a 10% chance of survival. I believe that I received 5,500 rads over 3 months. My weight went to 84 lbs. It was a rough time. Not any drugs to really help the side effects of treatment. No chemo at that time was known for that cancer. I believe that Prayer, Love from family and friends, good doctors and being burned by radiation, is how I survived. There is more, Now it is 1989 in Connecticut. I'm having flashing lights and black spots in my eye Turns out to be an Ocular Melanoma. I lucked out with the right doc again. He had studied under Dr. Graugoudas in Boston. He had invented the Proton Beam Radiation machine several years before. There are two of these machines in the country at the present. So I went to Boston for treatment. I have had no reoccurrence. I do still have sight in that eye. Jump to 1996, Fluid on my lung. Living in Houston, TX area. Went to MDA, to my wonderful oncologist that had been following me for 9 years for the sarcoma and melanoma. He diagnosed me finally with Mesothelioma ( asbestos exposure). They had been looking for a melanoma reoccurrence. Life expectancy....3 months!!!!!!!!!! WHAT, you must be nuts!! I feel great, I'm working full time. There has got to be some treatment for this!! As most of you know, MDA is the #1 Cancer Research Center,  and they are telling me there is nothing for me. I went to numerous doctors for different opinions. I have since had surgery to remove my lung in NY at Sloan Kettering. Unsuccessfully and told I had 6 months to live in 1997 Feb.. This is the # 2 Cancer center in the US. As they were removing the lining of the lung, they cut thru the diaphragm and saw the  cancer in many areas in the peritoneal cavity. Very rare to have it in both areas as two primaries. Less than 2,000 people were diagnosed with this each year at that time. Then in June, I began a Trial with Onconase, in Austin, TX. (Onconase is made from Leopard frog eggs) This involved having one injection a week. I flew there every week for 4 years. I finally was taken out off the trial to see if my diarrhea was being caused from the drug. Since, I was the longest living person on the trial, they had no one to compare me with. I was stable at this time with the Meso. The diarrhea is caused from the radiation that I had 29 years ago. I have had "d" for a very long time, but now it is almost unbearable. I can hardly go out of my house to even get the mail. I'm searching for help for this problem. I'm desperate. I have told the doctors that I am going to die of the diarrhea and malabsorbtion before the cancer gets me. I have been on TPN for over a year, due to the fact that I can not absorb nutrients. I can eat and love to do so. But it just goes straight thru me This next piece is from Bud, Jill's husband  "She got TPN several years ago for probably a year plus but each time she got an infection from anything, the infection would go to the PICC line ( peripherally inserted central catheter) because it was foreign to the body. She almost died twice from infections." A year ago, I had a bowel resection, where they could see that the scar tissue from the radiation was wrapped around the bowel. The doctor also did see the Meso throughout the abdominal cavity. He had never seen it before. They never told me what kind of damage radiation does. They now tell me that my radiation is still destroying good tissue. That is good, because, maybe that is why I have survived LMS, but on the other hand, it makes living day to day a real challenge with the problems it is creating for me now. At the present, I am having no chemo, only dealing with the "d" Believe me I would be off and running to start chemo again, if I could travel. Just driving to MDA in Houston is an ordeal with the "d". This has really drained me mentally. I think I accepted the cancer much better than the "D". I've learned to "live" with cancer and not "die" with it. Hope If you can look at the sunset and smile, then you still have hope. If you can find beauty in the colours of a small flower, then you still have hope. If you can find pleasure in the movement of a butterfly, then you still have hope. If the smile of a child can still warm your heart, then you still have hope. If you can see the good in other people, then you still have hope. If the rain breaking on a roof top can still lull you to sleep, then you still have hope. If the sight of a rainbow still makes you stop and stare in wonder, then you still have hope. If the soft fur of a favoured pet still feels pleasant under your fingertips, then you still have hope. If you meet new people with a trace of excitement and optimism, then you still have hope. If you give people the benefit of a doubt, then you still have hope. If you still offer your hand in friendship to others that have touched your life, then you still have hope. If receiving an unexpected card or letter still brings a pleasant surprise, then you still have hope. If the suffering of others still fills you with pain and frustration, then you still have hope. If you refuse to let a friendship die, or accept that it must end, then you still have hope. If you look forward to a time or place of quiet and reflection, then you still have hope. If you still buy the ornaments, put up the Christmas tree or cook the turkey, then you still have hope. If you still watch love stories or want the endings to be happy, then you still have hope. If you can look to the past and smile, then you still have hope. If, when faced with the bad, when told everything is futile, you can still look up and end the conversation with the phrase... "yeah....BUT.." then you still have hope. Hope is such a marvelous thing. It bends, it twists, it sometimes hides, but rarely does it break. It sustains us when nothing else can It gives us reason to continue and courage to move ahead, when we tell ourselves we'd rather give in. Hope puts a smile on our face when the heart cannot manage. Hope puts our feet on the path when our eyes cannot see it. Hope moves us to act when our souls are confused of the direction. Hope is a wonderful thing, something to be cherished and nurtured, and something that will refresh us in return. And it can be found in each of us, and it can bring light into the darkest of places. Never lose hope. Some More up to Date Notes from Jill Jill and her husband Bud have been experiencing a lot of storms which have created havoc with their home. First picture is the neighbours house. The side door looks onto our side of the house. The window is their bathroom Date: Tue, 16 Jun 2009 From: Jill Subject: Just a note Finally, able to uncover the PC What a dusty dirty mess, I'm in. The contractors worked Sat. and Sun. Glad Bud is here to over see some of this. We had to have all the windows and glass doors changed out as the wind from the Bay just blew the dirt and sawdust all over. Dry wall is being done out in the guest suite now. Painting in the family room. Still, much to do. The cats and I stay locked up in the bedroom most of the time. I finally got the MRI with contrast done Friday to my neck and veins in the chest to see if they would be able to maneuver a TPN line in. This next piece which I have also put in earlier on is from Bud, Jill's husband  "She got TPN several years ago for probably a year plus, but each time she got an infection from anything, the infection would go to the PICC line because it was foreign to the body. She almost died twice from infections. One side is completely obstructed with a blood clot also and the other side is partially closed. I had another test that determined that, but of course they need more tests. I'm very weak from malabsorption ,  due to the diarrhea and the colostomy. Don't think I will be able to go to Illinois to my grandson's graduation. Just have no strength. Only a little pain from the kidney stent and my rt. side, when I overdo things, like lifting . So I take some pain meds. I eat OK, but it just comes right out of me, so I feel hungry all the time. The TPN should help, but it limits me in my water activities and I will miss that with the grand kids and the wave runner. But I guess I'm just not as young as I use to be. LOL Guess I better get my butt in gear and accomplish something today. Will probably not have access to the PC for awhile, again. OH, did I tell you that I have reached my 13th year with MESO. I challenge you to go for it!!!! Peace to you all and prayers!!^j^ Date: Tue, 23 Jun 2009 From:Jill Subject: still hooked up in hospital Wishing I could be home accomplishing something. Got so much work to do with putting our house back together. Everything is in boxes and muddy and rusty. Have to paint all the antique wicker furniture. Lots to do. My veins are really a mess. They just put in a new IV line. the last one was hurting so bad. The liquids burn so bad and my arms are all puffy and swollen from the irritation to the veins. They stick those lines and needles in and jam them and then they mess up and have to start over. Today, the fellow did a great job and it went right in. I see my doctor out in the nurses station, so I should be hearing from him soon. I can't sleep at night. Thank heavens for movies on the TV. The plan was to have my grandchildren for about a month starting this weekend. Hope I can do it. Bud always helps. Think the doc is coming Date: Tue, 23 Jun 2009 From: jill vaughn Doc was in! There is another M D Anderson clinic in my area. So.....I have to see a doctor there to see if I can get my infusions there and not have to come into Houston. Instead of TPN, they want me to get 6 hour infusions twice a week at first to see if I can maintain the nutrients. I may have to go more often though. I really don't mind because it really has made me feel good. And believe me, I was dragging. Doc said I needed to stay a couple more days, but he doesn't always tell me the truth on that one. He said I would only be here 23 hours, too. and it is 5 days later. The food here is great. You can order anytime between 6:30 am and 9:30 PM . you can order as much as you like and many times a day. On Father's day they had STEAK , with sauteed shrimp and vegetables on top, asparagus, baked potato, roll, mango salad and chocolate raspberry cheesecake. Are you getting hungry yet Got to try and read some more mail. Peace and Prayers,   From: Jill Subject: Trying to look ahead and not back Just recently a Doctor told me to keep looking thru the windshield and not the rear view mirror. The "picture" is bigger. Maybe that is why it is so hard for me to write about my past hospital messes. I'm stressed, there is no doubt. I haven't missed but a couple of days going to the ER hospital, or a doctors office in the past two weeks. Seems as if nothing goes as it should. Well this "new" doc has finally got that figured out and has scheduled my next procedure in the hospital and to stay over night. (I hope that is all) This will require me staying in the hospital. This was a piece written by a friend to Jill Dear Jill (if you are able to receive this message), Since reading Jill's Story, which I'm glad Deidre made available to us --, Your strength is really amazing.  I have been  looking for something written in the List Server years ago.  Your  comment about your doctor saying, "Look through the windshield, not the rear view  mirror" was what sent me fishing through a mountain of stuff for the  poem -- because I remembered it as upbeat like you and that it is  very similar to what your doctor said about looking ahead, not  behind. Hurry and get well, Jill.  We need you driving (being engineer  on? our Train of Life here on the List Server. Bec (who has punched a ticket or two in her time) The Train of Life Some folks ride the train of life Looking out the rear, Watching miles of life roll by, And marking every year. They sit in sad remembrance Of wasted days gone by, And curse their life for what it was, And hang their head and cry. I don't concern myself with that, I took a different vent, I look forward to what life holds, And not what has been spent. So strap me to the engine As securely as I can be, I want to be out on the front To see what I can see. I want to feel the winds of change Blowing in my face I want to see what life unfolds As I move from place to place. I want to see what's coming up Not looking at the past. Life's to short for yesterdays It moves along to fast So, if the ride gets bumpy While you are looking back, Go up front and you may find Your life has jumped the track. It' alright to remember That's part of history but up front where it's happening, There's so much mystery. The enjoyment of living Is not where we have been It's looking ever forward To another year or ten It's searching all the byways Never should you refrain For if you want to live your life You gotta drive the train!--Author Unknown -- They last time I was in this hospital for a bowel resection in 2001 for two months. They finally gave up on me and sent me home with "tumour" fever" since they could not come up with anything else. I had 104 fever. One day later I was at MDA and they saved my life, but didn't think they would. I knew it was not tumour fever and it wasn't. The other thing, looking thru the rear mirror, after the last kidney stones in 1996, Mr. Meso raised his ugly head. Just can't seem to get a break. Have two grandchildren here for a few weeks for spring break (That's starting Sunday) I'm so looking forward to see them. Thanks heavens for a great husband. And most important is getting to CALIFORNIA for the CONFERENCE. I know I've skipped around, but that is the way my mind works. I've tried to read all your messages and hope I haven't missed anyone. Stay well and keep looking ahead!! From: Jill Subject: Jill update, I had a nice 7 hour sleep yesterday. . Right at this minute, I'm doing good!!, grateful. When you get to the end of your rope, tie a knot and hang on.  -- Franklin D. Roosevelt Date: Mon, 29 Jun 2009 From: Jill Subject: Infusion Therapy Just got back from 6 hours of infusion. Going to do this twice a week. So far I don't see any difference. I'm dragging!! Really do need TPN, but doctor who is going to do the "weird" procedure, had a heart attack and have to wait on him to get back. Docs are concerned because I get the urinary infection so often and this is partly due to the colostomy and not getting enough fluids thru the kidneys. Also the ascites from the Meso and the damage from the radiation. My 7 and 9 year old grandchildren are here from AZ. It's hard having energy to do anything with them. They will be here around a month. I'm hanging on, but barely. Just want to sleep!! LOL, Sweet Dreams to you all, Tue 8/09/2009 TPN line has two stitches to jugular vein.. one stitch has pulled out and line is coming out... no nutrition tonite.. must go to hospital tomorrow to get line taken care of, then 12 hours of infusion with nutrition and then 3 hours infusion with fluids... suppose to start physical therapy, but will have to cancel. ... also have to get blood work done. So that day is shot. Next day, doctors appts. Sister in law coming to help out. When you get to the link with these two videos, you will see there's 20 videos to look at. Scroll down till you see Jill's two   A Moment with Jill Vaughn 2009 http://www.adaotv.com/channel/video/39 Building your resource community http://www.adaotv.com/channel/video/39 You are welcome to link to our videos, but I don't have hard copies for distribution. If will produce a set, I will let you know. We made one collection in 2007, but the cost is steep for ADAO. Indeed, Jill is amazing!!! Keep up your great work. Linda Linda Reinstein, Executive Director and Co-Founder Asbestos Disease Awareness Organization ADAO) www.adao.us  Back to Kelly and Travis's story On To Lacey's Story

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