From: Sarah R. Fulkes <sarah@cyberhighway.net>

To: 'kent@via-media.com'

Subject: leiomyosarcoma uterine 19cm.

Date: Saturday, March 15, 1997 3:15 PM

Hello. I was pleased to read of your cancer as I too have this kind. I read all the data I could after I diagnosed. I had a routine checkup and was diagnosed with a fibroid. Not to worry, we'll do an ultrasound and plan to remove it later, the doctor told me. I manage a credit union in my home and am a member of the board of director's holding an office in the CU League here in Idaho as well as having a husband and 2 children. My son was in high school at this time and my daughter, whose address this is, was in college. My husband is an Assembly of God minister and District official here in Idaho and we are extremely busy most of the time, so I was busy and I pushed the fibroid to the back of my mind for 8 more weeks till my turn on the hospital's schedule came for the ultra sound. The first visit with the doctor was on Nov 8 and the test was Dec 20. during this time my doctor went out on maternity leave as she was not doing well and her office called me to tell me what happened. They asked me if I wanted to follow up with another doctor the day after the test

as we had previously planned or wait till March when she would be back in to work. The Lord was sweet, because I knew from her talk to me that the thing needed out so I decided to see the surgeon and not wait for her to come back to work. I really started to put it off because we thought it was just a fibroid, but, for some reason did not. When she had diagnosed it, it was 6 cm. and she was sure it was a fibroid, after all, it was smooth walled, no strangeness that would have tipped her off and like you know, ours is a rare one. The hospital's first non-serious opening for a ultra sound was Dec 20, and with my follow-up appointment the next day I was eight weeks later getting my tumor out. ( In order to keep the credit union, family and church cool and calm, I nicknamed it George and made jokes about a little non-brother for my two grown children.) The "joke" was on me. "George grew from 6cm. to a whopping 16 cm in the short span of time from the initial visit to the ultra sound. The next day the surgeon that I met with was a very unhappy man.

I had this cancer, he told me and Doyle, and he was pretty sure of it, but I might have only a fibroid, though he did not feel a fibroid was correct. ( that last admission from him was given I see now with out much conviction, but was really what I wanted to hope for. Doyle and I have a friend in Kentucky who had been fasting and praying for several days for revival and for his mom, (colon cancer) and had called me early one morning with a message given to him in prayer as he drove along. Kenn felt that the Lord told him to call me and tell me everything was going to be OK. He did so and I was pleased. Usually I don't put much stock in personal prophecy as I have seen so many abuses, and Kenn was probably one of the only people that I would have listened to. My Doyle would have been ignored too, as I believed him to be too close to the situation. This was about Nov 20th. When the doctor told me, I decided that Kenn's message was to mean that I would not have cancer, and as my sweetheart and I dragged ourselves the 40 miles home I told him over and over, not to worry. Kenn said God told him to call me and tell me it was going to be ok and I was sure that meant "little George" was just a fibroid of size. I lost my father to cancer and knew what it could mean. I was only 44 last year and didn't want to die. The year before we celebrated our 25th wedding anniversary and I had so much to live for and so much I wanted to do. The surgery was to be Jan 5, 1996. The surgeon was so unhappy he wanted to do it sooner, but

was himself going to be out of state for Christmas so I was able to get all of my Credit Union work for the end of the year closing, statements printed and sent and the letter enclosed for each person to know I was going in and would be closed for a short while. The CU has about 780 members, and it is maintained here in my home. I know most of the membership by name and face, but was to learn that I was no stranger to any of them either.

I had surgery Friday 1/5/96 and the report was to follow asap. We did finally get news the 8th, 3 days later. The doctor came in and he was nearly in tears. To back track a little when he did the surgery he'd come to Doyle after it was done and told him it was just massive. "George" had seemingly contained in the uterus, but was roughly the size of a basketball. It was over the right ovary, ( the ovary that never showed on the ultrasound screen, in fact the entire screen was nearly completely white ) and above my belly button, and nearly over the left ovary clear to the pelvis area. He was amazed. When he came in that Monday with the results of the report "george" was no longer a joke. george was cancer and he was not nice at all. He was mean, and aggressive, and by that time, we were all in shock. The doctor asked if we had questions, but I only wanted him to leave so I could get down to the tears, and over some of the initial shock waves this had produced. We have had hard times before. Our 1st son died in Doyle's arms in Waxahachie TX on Christmas Eve in 1972 with complications to heart disease, most of my family is gone, and our daughter had a tumor as a child, we nearly lost our next son at birth with placenta previa, and now this. I have learned to roll with the punches, but this punch was the one that we both new could separate us as a couple. It was very horrifying. In it all when we calmed, I remembered Kenn's hearing God tell him to call me right away and tell me that it was going to be ok. I knew then, the trail was here, but the victory lay ahead, and at times could even find comfort in that through the shock and horror of that word, cancer. In the weeks to follow, my poor heartbroken church took intense interest in us. They have always been good to us, but responded enormously. My credit union members, some whom I never met sent cards, letters, gifts and many prayers in my behalf. The Assemblies of God prayed continually for us and many greetings were sent from all over. My CU is mostly LDS and they entered my name in their temple prayer rosters, an act of which I felt very loved and cared for. I went back to the hospital each week after that surgery to be checked out by my surgeon and by an oncologist. He is the most amazing person, and upon meeting me said " Leiomyosarcoma!! How in the world did you ever get that?? No one gets that. Then he turned to me and said this...Oh, Mrs. Fulkes, I really can't say that, my mother had it, and she beat it. That was over 20 years ago." Now, don't you think that is just like God? He seems to take care of every thing in advance, as our steps are ordered of Him. Even to the point of sending a Louisiana girl like me to Idaho where He had moved a nice Jewish oncologist from New York City whose own mother had my and your rare cancer. Over the next several days, we called each other from Boise where is to Burley where we live. From my surgeon I learned that the slides from the surgery at Twin falls where it was done had been sent for a 2nd opinion to Boise. We met the oncologist in Twin where he and another doctor comes on Thursdays for the cancer center patients so they don't travel out of the area any more. We are rural in case you haven't guessed. He called his Boise hospital and got the results. We knew it had not traveled, but seemed to stop at the wall of the uterus, so that was good, but DR sent the slides off anyway. The initial diagnosis was right, it was leiomyosarcoma, but did appear to stop at the wall, with no pelvic area spread. The messy part is that they don't seem to like to see a division rate of over 10 cells, and my slides were 30-50. Rats.

The state was 3, and the cancer doctor was not pleased. He put my case before the tumor board and called on Tuesday 5 days later. They decided to do 2 chemos. Ifosfomide and cisplatin. 16 doses, to come over 3 week intervals, and take most of the day to deliver. I went on 2/5/96 for the first session of 4 doses, then after two weeks back again, and so on till done. The doctor wanted me to go on SSI during this time, but as I mentioned we have a credit union in our home and I didn't want to hurt it, or train anyone to do it for a short term so we kept it open. I believed my illness might cause instability in it, and I knew the members would want to know how I was, so we worked around the treatments. The membership in the CU was so supportive and the sicker I got the more supportive they and my church family became. I was finally reduced to moving the computer into my room and hand writing my loan forms out. It was so amazing. My doctors from Boise couldn't believe how I was maintaining. At one point I was asked if I started the chemo, and another time one wanted to raise the dosage from enough to more than enough because my blood was never changed by the stuff. Your counts are taken and watched carefully, and mine were better than they were when I came in. One of the church members and their entire family I was later on to discover, had taken the blood counts to prayer each day. Mine never revealed that I was on therapy. I kept my humor, discovered bald is not bad at all, how much time a woman spends on her hair is silly, but you must keep a wet cloth nearby because when your head sweats you smell like an old man. I discovered one member in the CU has an oncology nurse daughter who saw many leios and most were cures, and learned I am a warrior. I refused to allow the stupid disease to steal my humor, and only allowed depression after the last day of each session to totally overwhelm me for a couple of hours. You need all of yourself you can get and if it can this stupid disease will steal you from YOU. I loved to read Job's last 4 chapters when the Lord speaks. He seemed to be saying, every thing is and has been and always will be in control by Himself and that he knows where I am. I enjoyed the last chapters of Revelation also, as they speak of promise. I learned all that I never wanted to know about my disease as you have done, but I know that everyone does not die of this and even though tumor size is one of the componants used for expected survival, and mine was huge I know 62% of us can survive past the 5 yrs expectancy.

I learned that many people of our disease made it, my own doctor's mom for one and I hope to be one of those. By the way, I also am reminded that with my eyesight I am as likely to step in front of a Mack truck as die of this. I try not to worry, but, Hey I do!!! I will forever on this earth be reminded that one immature cell can unexplainedly divide too early and another and another, ect again. I hope that won't happen, but in the mean time I am here, amazing doctors, and entertaining family and friends with my letter to you. Sincerely, Julia Fulkes