It started with a pimple on my butt. That's right.... my butt! My name is Kent and I'd like to share my experience with you. I hope that by doing so, I will have given you more hope than I first had at the first news of my ordeal with "The Big C", cancer.
Look at me! You might be able to tell from this picture, I'm a pretty big guy. Worked out. Weight lifted. Always took supplements. Loved the boat and the outdoors. But I was the healthiest looking sick guy you ever saw.
In the beginning, I didn't know if I wanted to share the news with my family and loved ones. I don't like to feel pitied: those looks in people's eyes. And I didn't want to worry and torture my family with something so dreadful. But at the same time I'd feel so alone without some sympathy, or better yet, empathy from those I loved the most. Eventually, I saw the wisdom in sharing everything with my wife, all my three children, all my loved ones and friends, . I finally wanted the whole world to know. I needed their support. I needed their information. I needed their prayers.
Usually they say that you need to be as informed as you can. Read everything about your disease. Talk to other survivors. So that's what I did. I started reading everything I could get my hands on. I even did extensive searches on the Web!
WHAT DID I LEARN?
My cancer is a very rare cancer of the soft muscle tissue of the body. It can show up virtually anywhere on the body that has soft muscle. It's called "leiomyosarcoma". Less than 1/100th of 1% of all cancers will be leiomyosarcomas. That's good for those that get the other cancers because the latest research says that neither chemo nor radiation are very effective against leiomyo. This was just the beginning of some of the scary stuff I discovered reading all the medical PDQ's and trials. I couldn't find any survivors! What? Wait a minute! That can't be! I was told that there are now survivors of every kind of cancer known. Well, because leiomyosarcoma is so scarce, finding any survivors was even more scarce. My reading taught me even more scary things that I won't even tell you about now,... frightening statistics and unsuccessful trials.
It is the tendency of many to think the worst about their case. And after reading about the worst, that's just what I did. My faith was tested like never before. (And I am a retired preacher of 19 years in the ministry). So what's the bottom line? I learned that not every case is the same. . Not every trial is the same. The medical trial reports and PDQ's are based upon averages of many cases. Some severe. Many in those cases that didn't survive were already well involved with the disease. I learned not to read too much! And not to apply everything I read to myself. Very Important!
I had a pimple on my butt. Right on the cheek. I "popped" it. Then a few days later, I popped it again. But this pimple didn't go away. And of course, I kept picking at it like all good baboons do.
Eventually I left it alone and it got scarred over. But it still didn't go away. Months and Months later I noticed it itching after a shower, a reddish cyst-like lump. So I went to my family doctor at my wife's insistence to have the unsightly lump removed. My doctor told me to leave it alone. So I did.
Months later I again asked my doctor to remove the cyst-like lump. Again he refused and recommended I see a dermatological surgeon if I insisted on having it removed.
I made an appointment with the first surgeon and he did a "puncture excision" and sent it off to the lab for routine testing. Two days later I got a call telling me that it was "malignant leiomyosarcoma" and that I had to schedule for another surgery.
I was then sent over to another surgeon at Stony Brook University Hospital. Within four days I underwent a second more involved surgery called a wide excision of the area, (about the size of a Big Mac). Again the tissue was sent out for routine testing.
Seven days later I got another disturbing call. A diagnosis of a "high-grade leiomyosarcoma" was confirmed, and that they still didn't get it all due to the highly metastatic state of the cancer. It had begun to spread!
I was then referred to yet another surgeon who ordered a number of tests. Bone scan, brain scan, Ct scan, liver scan, mri, blood tests and more.
WHAT ELSE DID I DO?
I prayed! And I'm still praying. And I got as many people as I could to pray for me. Even in other parts of the country and the world! And how did I pray? Like it says to in James 1:5-8, thanking God already for the answered prayer. I prayed that God would remove the cancer from anywhere else it might have spread to in my body. That all the tests would come back negative. That I would be around many more years to see my kids get married and to play with all my grandchildren. And when doubt came in, and it did, (and does), I prayed that God would forgive me for that too!
I also started taking a whole bunch of supplements and herbs and teas. Everything from Essiac Tea to Selenium to Shark Cartilage, about 50 pills in all. And thank God for Prozac!, which I was already taking for 4 years now.
SOME GOOD NEWS!
All the tests came back negative. As best as they could tell, the leiomyosarcoma hadn't spread to anywhere else in my body. I just needed to get the rest of it out through a "radical wide excision". I also met with a reconstructive surgeon.
Since I lived within an hour's drive, and again at the insistence of my wife and other relatives. I made an appointment at Memorial Sloan-Kettering Hospital. I brought everything with me... Biopsy and pathology slides, reports, x-rays, films, you name it. And after careful review I decided to have the third surgery there. With no chemo or radiation therapy to follow. I decided to have the surgery at Sloan because they see so many more cases of leiomyosarcoma than anywhere else in the world. The surgery went well they say. I don't remember it. The care there was great. My stay in the hospital was comfortable.
Recovery has been slow, though the doctor did tell me that I'd take about 6 months to get back to normal. They had to take a lot more tissue, though it really doesn't look all that bad. Healing has been slow due to the area where the surgery was performed.
My doctor tells me that I am about 97% cured. Unfortunately, with leiomyo, it's very difficult to be 100% sure. But he likes to keep reminding me that I am "cured", and that I'm going to have to find another way to die. After the wound is completely healed the doctor wants me to return for routine exams every 3 months for the next few years. I am very optimistic now.
I have been going for my 3 month check-ups faithfully. So far... so good. They haven't even run any major tests on me since the last surgery. I did have a ruptured colon (unrelated) this past April resulting from diverticulitus. They wanted to do a partial colon resection. I declined. Instead I will take Metimucil daily for the rest of my life. Again, so far... so good. In August my wife and kids left me due to many family stresses and pressures which also included financial, business and problems with my older kids. On Thanksgiving 1997 my family returned. We had a great family dinner. What helped the most was a fantastic marriage saving workshop we attended offered by the Family Dynamics Institute of Augusta, GA. From the principles we've learned now, our marriage and our family is better than ever! Praise God! He stuck with us!
First of all, I want to thank so many of you that have written to me telling how much this site has helped you. I also want to let you all know... "Yes... I'm still alive and healthy!" Some of you have written me concerned because I've not added an update for some time now.
Over the past year or so I've been having a lot of abdominal pains, and given my history I decided to have things checked out. So far, so good! They did sonograms, CT's, mri's, and x-rays. Here's what they found. Liver-a little spongy (probably from long term medications), but normal. Pancreas - Normal. Gall Bladder - normal. Diverticulosis - still present and causing intermittent problems and pain. HOWEVER, Kidneys - 2 large masses found in center of left kidney. Appearance consistent with watery cysts, about 2.5 cms in size. They will monitor these about every 6 months to see if they change in shape or size. I've been told that this is fairly common in people over 40, most of whom will never know they have them. I've been assured that they are NOT LMS. I sure hope they're right!
All of these tests also helped dispel some of my fears about other aches and pains. As much as these tests are able to tell, any back pains, abdominal pains, heartburn and other symptoms are NOT related to Leimyo right now. They may have other causes and are bothersome, but they are not life-threatening. And I praise God for that!
Well, first of all the small mass in the kidneys turned out to be a stone. Last year, all of a sudden, while standing at the urinal I looked down and saw what looked like tomato juice coming out of me! I was "pissing blood"! Scary! No pain though. I called me doctor and he told me to come see him right away. Before I saw him, when I urinated again this time it looked like coffee. Anyway, the next day the pain started on the CT Table. Oooouuucchh! Two weeks later I passed a stone that resembled a sharp piece of brown glass!
Three weeks ago I had another lump cut out of my upper right arm. Pathology results came back as a benign lypoma, "fatty tumor".
Over the past year or so I've been having a lot of abdominal pains, and given my history I decided to have things checked out. Last week I just got out of the hospital after receiving a colonectomy and resection of the colon down to the rectum. The old diverticulitis flared up again and this time had to be dealt with. I am now home recovering. No cancer was found so far... only a very diseased colon. Still no LMS. Praise God!
I am doing fine! No recurrence thus far. I can only say that I give God all the credit!
I do take a ton of supplements and to look at me, most people never guess I am in my middle 60's. I take a lot of antioxidants.
But you have to be careful, even with supplements. Here's a little story below that really happened to me a few months back................
About 6 months ago Pat and I went to Las Vegas. One night I had a very strange dream, (I thought). In the middle of a dream, it seemed like things faded, and then there was a very bright light in the midst of darkness. And in the middle of the light it looked like large flowing wings, and it started to get closer and closer. I don't know why, but I remember deciding I don't like this "dream", and I want to wake up! Except I couldn't. I remember fighting and fighting to wake up. Eventually I did wake up. When I did, I was dizzy and had the same feeling when I've woken up from general anesthesia. It actually took a little while before I could sit up. I thought, this was a very strange dream! Like what some people described as their "near-death-experience".
Now I should tell you why I considered that it may have been more than a
On that very night...
1. I had just had my prescription for Metoprolol doubled (which slows the heart and lowers blood pressure.
2. I also took some Ambien to help me sleep because of the time zone issues.
3. I also took 3 Imodium to stop the diarrhea I was having that evening.
4. I was also taking a double dose of Magnesium supplements to help stop my restless leg issues that prevent me from sleeping. (But I also since learned that Magnesium slows down the heart rate).
5. Then, during that same evening, I decided to enjoy a 42oz. Margarita! (really dumb move).
6. This was all on the same night of my seeing the bright light in my sleep.
7. Upon returning to New York I went to a heart surgeon/specialist. He put me on a 48hr. heart monitor.
8. Upon reading the results he called me in immediately and reviewed my prescriptions and changed everything immediately that my physician had prescribed, and the supplements I was taking.
8. The heart specialist told me my heart, especially during sleep, was slowing down to less that 20 bpm.
9. And then my heart would stop for up to 8 seconds at a time, more than 120 times per night.
10. And that was AFTER Vegas and without the alcohol, Imodium, magnesium, and ambien!
11. Add the additional items from that night in Vegas... and you have "cardiac arrest", probably for several minutes!
12. Then the specialist told me he didn't believe it was just a dream that I had in Las Vegas! That my heart was probably stopped for minutes and not just 8 seconds more than 120 times each evening.
Conclusion: I died in my sleep!
Though I can tell you that this is the way I'd like to go, when the time
comes. I just don't want it to be sooner than it needs to be. And now I'm 63.
I learned to be much more careful in the future - God answers our prayers.
P.S. Follow-up scans and intensive testing after medication modification indicate my pulse NO LONGER slowing to 20 bpm or less, and no incidents of my heart stopping! Not even for one second! Praise God! I pray I have a few more years to go!
I hope this page helps you greatly. I really needed something like this out there. I couldn't find very many people who could say they survived leiomyo. I hope that you'll be blessed from what you learn here. And if you need to contact me, please feel free to Email me anytime.
I Have Taken To Help My Body Fight Cancer?
(But Presently I am only taking Aldril & Prozac & Aspirin)
From Others With Leiomyosarcoma
(Please Let Me know If The Board Appears To Be Broken)