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MARTHA-ANN's Photo MARTHA-ANN Posts: 8,744
6/11/08 7:03 P

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Thankyou for sharing your story Cindi, you sound as though you have come through it well and have a beautiful family too.
Congratulations on your weight loss so far and good luck on the rsst of the journey to goal.
Take care. emoticon

martha-annsmiscellany.blogspotMartha-Ann, Yorkshire, England.

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It does not matter how slow you go as long as you don't stop. Confucious.

You only get out what you put in.

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KJDARG's Photo KJDARG Posts: 52
6/11/08 1:37 P

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Thank you for sharing your story. I have never heard of choriocarcinoma until today. Congratulations on your long survivorship!

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CAROLYN0107's Photo CAROLYN0107 Posts: 31,242
5/4/08 1:37 A

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Thanks so much for sharing all of the details of your cancer ordeal. I am a Maternity nurse, and I also teach all the OB classes as well as the Midwifery classes in our Nursing School. I teach about Choriocarcinoma but have never seen a case before.

I agree with you when you wrote: ".GOD did all of this - not me, to be clear. HE healed me as He is the Great Physician (Jehovah Rapha)! All I am and ever will be is because of Him! He is my Adonai (Lord and Master)!"

I was so excited when I was diagnosed with ovarian cancer. What excited me was that God was so good for this cancer to be found in stage 1 and that I didn't need further treatment after surgery. I had a friend who had died of ovarian cancer because it was caught late.

God is so GOOD!!!!


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5/3/08 8:28 P

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Thanks Sharon! I agree - God is definitely good!

I am glad that you survived too!



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MAINLADY's Photo MAINLADY Posts: 1,916
5/3/08 8:17 P

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What a wonderful story and thanks so much for sharing. When you were sick it must have been a very scary time for you, your husband, and family but I have a feeling that through it all you kept your faith. I would also assume that you had a mighty prayer chain going for you. I do believe that the power of prayer is mighty. I'm so glad that you are alive and well and the mother of three wonderful children. God is definitely good.


Don't wait for the perfect moment - Take the moment and make it perfect.

Sharon - April 19 birthday

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5/3/08 6:59 P

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I had been pregnant and the baby naturally aborted; my body had some difficulties in transitioning from the 1st trimester into the 2d trimester stages of pregnancy - my body could not hold on to the baby. The dr said I had to have a D&C, so it was done. I had the "scraping kind" not knowing that there are actually 2 types of D&C procedures from which to choose. A "scraping kind" is where the dr goes in and manually scrapes around the uterus to clean out "whatever". The other is a "suction kind" that "vaccums" out the uterus of "whatever". (It would be later explained to me that the "scraping" version is not good - the dr can scrape in there all day long and not be too sure that the contents were totally cleaned out; think of shaving your legs and the shaving cream that is left behind as you make your strokes. In contrast, the "suction" version has dramatically improved chances of everything being completely cleaned, since the dr can measure where he/she's suctioned as he/she goes along the process. This scraping procedure will prove critical for me.

After several months, I again was pregnant - this time with twins! (All my husband had to do was look at me and I could be pregnant!) We were so thrilled! Everything was going fine and suddenly I began to have episodes where I would just suddenly collapse in the floor and be temporarily paralyzed. After a little while, I could again get up. It was very scary, especially being pregnant! This time I made the pregnancy stage transition okay and except for this unexplained collapsing/paralyzation - all was great we thought. A short time later I began to have heavy discharge and it got to the point that I could not really leave the bathroom, not to be too graphic here. I would see things pass that were large liver-like clots. We would later learn that those were portions of my internal organs. emoticon Really.

Despite all of this, our twin babies were still hanging in there! I became enemic very quickly and had no energy. We went to the dr/ER near daily and the ER kept telling us that this was normal! That I just needed to go home and rest! (I was 22 yrs old. Young yes, but knew this was anything but normal!)

About 2 weeks later I got a call from a dr that I had not contacted and knew nothing of. To be honest, I thought it could be/probably was a cold-hearted prankster who probably had overheard our phone number on one of the many trips to the ER. The man on the other end of the line explained that my OB-Gyn had asked him to call me and to do an examination on me and he needed to see me ASAP that day. (Because my dr had not even mentioned that he'd done such a thing to me, is why I really felt this was a horrible prank call.) It wasn't. This guy was for real. When my loving husband came home, I told him of the odd call. He said we should get in the car and go check out if this guy was even on the marquis at the location he gave. He was, so we decided to go see him. He was an OB-Gyn Oncology specialist. He and his dr partner met with us and said that they wanted to do independent exams on me and then we'd all meet and compare notes. They told me that the babies were good, but the situation was not. They wanted to send me for an ultrasound, but the machinery was undergoing regularly scheduled maintenance then and we'd have to return in the morning for that procedure. So we did. As I lay there on that table, the sonographer suddenly ran out of the room and in rushed about 9 other drs with her. They all gathered around and wouldn't make a single sound - they just glanced at each other. They told me that they needed to rush me back upstairs to see the dr. Once there, the dr came in to the exam room where my husband and I were waiting. He said that I had to have a D & C immediately and that they needed to not waste time and get me prepped for emergency surgery ASAP. He said that there was a chance that my babies could live, but would have to be in the neo-natal ICU because it was early for them if they made it; he couldn't guarantee anything - there was just as big a chance that we'd lose them. He continued to say that if I didn't have the surgery that none of the three of us would make it. Going further he said, "I don't want to play God in this thing, but today is Thursday. With what we're seeing we really don't think you're gonna live to see this Saturday; it is that time critical that we do this."

I'm sorry, but I got a little beligerant with this man because I had only met him the night before and just couldn't believe what I was hearing. A D&C would save my life! That sounded preposterous to me!

At that point I was emotionally drained and quite upset. I got off the exam table, proceeded to get dressed and blatently told him that he was cruel and there was no way I was going to let him or anyone else touch me with a scapel or anything else and buttoning my shirt began to walk out. He ran after me, begging me to reconsider. He told my husband and I that if I would just come back to that waiting room and let them talk to us a few minutes more - he only asked for 5 more minutes of our time, we might have a different perspective. So at my husband's urging, we did. The dr said that he could very easily understand my position and that if it was him, he would probably react the same way if not worse. But his eyes were steady and his voice was clear that this situation was real. He said that we could walk out of his office if we chose, but that he had to try to really get the urgency of the situation across, the sonogram showed that a hole bigger than the size of a Silver Dollar coin had been eaten clear through my uterine wall. He said it's been 3 minutes. I only asked you to stay for 5. I'm gonna walk out of this room and will be just outside. During the next few minutes, I urge you to discuss this and when you walk through those doors, tell me what you've decided. My husband said to me, crying, that he loved me and he loved our babies and he didn't want to lose any of us. He said that perhaps God would let our babies live, but that if not, he couldn't lose me too. He said that if it came to be, perhaps God would allow us to adopt
child(ren), but that he just couldn't lose me too. He begged me to have the surgery; he said that perhaps God would even give us other natural
child(ren); that he didnt want to take a chance that the drs were right! Physically hurting, exhausted, crying I could not ignore the deeply heart-felt plea of my husband, so I agreed and was within minutes prepped and in surgery. Most sadly, our babies did not make it. emoticon

I was told that the suction D & C went fine. I should not have the collapsing/paralyzing episodes anymore. I would stay in the hospital for 2 days for observation and then go home, that was Sunday. That night at home at 2:00am I was awakened with that same unbelievably intense pain that caused the collapsing/temporary paralyzation. I was rushed to the hospital and admitted immediately. After seemingly just about every test I ever heard of and some that I hadn't had been run on me, the dr came in and said that I could go home the next day- nothing was showing up on the reports coming in, so it should be okay.

As my husband had come that next day (it was December 3 - I said it was the worst day of my life; this is important - remember this) to take me home, a team of about 10 drs came into the room. I was in the hospital bed, my husband off to my left sitting in a chair and holding my hand. The dr said, "...we have some news. Forgive us but in our experience blunt is best. You have choriocarcinoma." I didn't know where it was, but I knew carcinoma meant cancer. My sweet husband lost all color in his face and it all seemed surreal. The dr went on to say that a lot of the test results were not in yet, but from the few that were in it looked like they had caught it in its early stages. If I would agree, I would need to take perhaps only 1 chemo agent. We were in shock. The dr then said I could not be released to go home - they needed to get the additional test results and keep monitoring me. The next day, while my husband had gone to get my aunt at the LAX airport which was several hours away - she was the only one who could immediately come; my family decided that they'd take turns coming out rather than all at once- that same team of about 10 drs came back into the room and again said they had news. I was far worse than they ever dreamed and that it was stage 4; all of the test results were in. If agreed, I would have to undergo the most rigourous course of chemos available, possibly have to have radiation, surgery and they had to act fast. My hospital roommate heard everything and she was very supportive of me. A few hours later, my husband and aunt arrive in the room and I can't even speak. My roommate has to deliver the news. At this point, I literally have a true "blank" spot in my memory; I don't remember a thing until sometime the next day.

The long and the short of things is that I would end up taking the 3 most potent chemos at the time, using a hepron lock (multi-port IV device) that had to be changed daily. The meds were so strong that I was told that they had to use different veins to push the meds because if they duplicated it, as long as I do live - that vein would die. Each chemo round would take over 4 hours to hand push, because it had to be done extremely slowly. One of the medicines made everything taste like pond scum (meaning unbelievably/undescribably gross), one of the medicines made everything smell like everything tasted and the remaining chemo med was like having a fireball injected into your body that you could not escape. I tell you the truth that it was hell on Earth. A torment that I wouldn't wish on my worst enemy!

My dr told me that by all rights I should have already been dead when they found it and that it had to a God thing for me to be around - medically there was no explanation for it. The number of times they could have declared me medically dead are so numerous it'd make your head spin - little to no pulse, low blood count, no breath, etc.

Among the many results of me taking chemotherapy, I was diagnosed totally deaf in both ears. My highest mark on the chart was well below the lowest decibal on the chart and both ears matched exactly! BY GOD'S AMAZING GRACE, I am NOT deaf! I have never had to wear a hearing aid a day in my life!

In the course of my treatment my husband and I would be told that we could not have natural children, because they needed to remove my female reproduction system (TAH). Being so young, I begged them to not do it. As the discussion went on, my vitals dropped dangerously lower and the partner dr said we'd have to table the discussions until another time. He also said that while they really needed to do this procedure, they were highly concerned that I might not walk off the table because of the spread cancer and opening me up could finish me off. We would not return to this topic for a while.

The drs told my husband and family SOOOO many times that I would not make it through the hour, I was just too sick and they'd been doing all that there was they could....literally hundreds of times....

and I'll try not to be too graphic here, but I would vomit so frequently that literally all I could eat would be a single saltine cracker for 2-3 weeks and STILL couldn't keep that down. It was
U-G-L-Y to say the least!

In February 1987, I had an appointment to see the dr to see if my blood count was high enough to take another round of chemo. I was sitting on the exam table when the dr came in wearing party hats and blowing noise horns! I could not believe what I was seeing - it hurt me and angered me. I told him it was not funny and I didn't appreciate it. He told me that he could fully understand my position. Then he explained why he was behaving in such a manner. My titers were less than 5! That meant that there was no ACTIVE cancer showing in my body!

But he again explained that they knew the cancer was "asleep" and that I'd have to continue taking chemo for a couple of months.

"Asleep" is NOT "Remission". As he explained it to me -
"Remission" is when you have the condition and ALL of the diseased cells are currently inactive.
"Asleep" is where you have the condition and a PORTION of the diseased cells are currently inactive and a PORTION of them are active. Those that are "asleep" will in effect "wake up" be harder to kill out, double in count rapidly, etc.

The statistics (at the time that I had choriocarcinoma; they may have changed since then):

. It attacks Oriental women in their 70s - 80s.
I'M CAUCASION AND WAS 22! There were no known cases of it striking caucasion previously!

. It is rare - most doctors have never had a real case, and IF they've heard of it - it's only been in textbooks.

. It's rare because it "falls asleep" as above. (Most cancers go into remission instead.)

. It mimicks pregnancy IN EVERY WAY - just no baby!

. It can double its total cell count in an hour!

. The umbilical chord has 3 components BEFORE it officially forms the umbilical chord. One of them is called Choriozon. (I think I spelled that correctly.) This is where this cancer gets its name.
It is in the uterine area, but is NOT "uterine" cancer.

The cancer spread throughout my body, attacking my lungs, liver, etc. I never had asthma until after this cancer. Every year since the onset of the asthma it has gotten progressively worse. I am now considered an EXTREME asthmatic - any kind of smoke at all and I immediately suffer severe attacks.

As I have told you a lot (but still not all) of the "bad", let me tell you about some of the "good" that GOD has done! emoticon

. I am NOT deaf! I've never had to wear hearing aids a day in my life, as I've already said!

. I'm CURED - not Asleep or in Remission!!!

. God has granted us 3 healthy natural kids! (G,B,G)
True to Romans 8:28 (NIV) - "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." - God turned the "worst day of my life (Dec 3, 1986)" into one of the best days of my life! Our son was born on Dec 3 several years later! (Yes, there's a story behind that too - one that only God could do!) He took the bad and made it good just as that verse says!

. April 23, 1987 was my last chemotherapy. The dr. said that we could not even think of becoming pregnant for at least a year IF my rigorous testing stayed clear. That the sonograms done my next to last chemo round showed that the hole in my uterine wall had completely closed and that if they didn't know of the previous films, they could not detect that anything had ever happened there! He explained that THE SOONEST time frame to revisit the idea of pregnancy if testing was well would be the end of May or the beginning of June the following year. As I often do when I pray, one night I talked over my desire to have a baby with the Lord. I had my Bible in hand and asked God to show me what He'd have me to read. My Bible fell open to the story of Hannah. Perhaps you're familiar with that story; if not SP mail me and I'll tell it to you. One month later from that night, we learned that we were going to have our oldest daughter! (We didn't know what the sex of the baby was - wanted it to be a surprise.) That timing was the end of May the following year - the earliest time frame the dr had said it would be ok! There were a lot of special pregancy issues/concerns, but she was born with Apgars of 10! All of our kids were born with that level of Apgar scoring!

.GOD did all of this - not me, to be clear. HE healed me as He is the Great Physician (Jehovah Rapha)! All I am and ever will be is because of Him! He is my Adonai (Lord and Master)!

I am so thankful for what He has done! I am thankful for every breath and heartbeat...for my family and my friends and all that He continues to do for me! Celebrate life with me - it is precious and not to be taken for granted! Celebrate with me!

Thank you for your time, as I know this is long. If after reading this, and you have questions about my cancer experience, the stories behind what God did regarding each of our children's births, or you want to know more about our loving, faithful Father in Heaven, it's okay to ask me. emoticon

Edited by: ROSEGARDEN6 at: 5/3/2008 (19:48)

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