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Abbreviations & Acronyms
dx diagnose, diagnosis
FSH follicle-stimulating hormone
IBS irritable bowel syndrome
IVP intravenous pyelogram — study to look at the kidneys and ureters
NED no evidence of disease
s/s signs & symptoms
SLS second-look surgery
TAH / BSO total abdominal hysterectomy / bilateral salpingectomy and oophorectomy — removal of, respectively: uterus, fallopian tubes and ovaries
tx treat, treatment
US ultrasound
WAR whole abdominal radiation
   
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Susan M. Bowes-Johns

Submitted on 08/28/2003
Photo of Susan M. Bowes-Johns In 1996 I discovered vaginal and rectal bleeding.  My stomach was bloated, and I felt a great deal of abdominal pain. My energy level was gradually diminishing.  And off I went to a few of the University of Wisconsin clinics.  I was given some medication to help the bleeding.  It was thought that I was "emotional" due to my upcoming marriage.  A few months later, a cyst was removed which was benign.

Instead of becoming more mobile and symptom free, I became very sick.  I was extremely tired and found it difficult to continue daily activities.  I had constant frequency of urination.  My enlarged abdomen was very painful.  Eight months after my cyst, same day surgery, I ended up in the ER at Meriter with vomiting and such intense pain I could not walk.

I was referred to a urologist as the ER docs thought that I was passing a possible stone or may have gall bladder problems.

The urologist ordered a cat scan and knew that I was involved with a gyn ovarian serious problem immediately.  He then called a gynecologist and made an appointment within the next few weeks for me to be seen.  I was then seen and surgery was scheduled a week later.

After many hours of surgery on 4/21/97, the gynecologist met with my family to tell them that they were able to remove my cancer including one lymph node and spleen.  What was left was a "snow" on the abdomen.

After 7 days in Meriter Hospital in which I received wonderful, and nurturing care, I was sent home with a follow-up visit to the gyn doctor.  Each day I, again, became sicker with nausea and eventually experienced breathing problems.  Another trip to the ER was warranted.  At this time, the pain had to be controlled as it was unbearable.  I entered Meriter again this time with complications from my prior surgery.  I had pneumonia around the lining of my lungs.  It was very solid and I needed chest tubes and treatments to try to break up the solid mass so it could drain. It was successful and I was soon to be released to go home. I was very pale and still in extreme pain and could not eat.

My husband  then asked if I could be seen by the surgeon on call.  The surgeon gave me a cat scan and blood work and I needed emergency surgery because I was bleeding in the stomach.  You see the infection had started in the stomach but I had only had treatment for the chest.   I knew it was very serious as I was getting frozen blood.  And the pain was not being able to be helped by anything.  The nurse who was with me told me later that she couldn't even find a good time for me to go to surgery, so, I just went.  I do remember the surgeon saying that I had a 50% chance of survival.  I began to pray and couldn't remember the prayers so I just talked to my Higher Power from my heart.  I wasn't sure I was going to wake up alive.  Just before I received anesthesiology, I felt peaceful and just "let go" of my life and placed it in my Higher Power's hands.

I awakened on a ventilator.  Within days, I was back on my favorite floor where the nurses were so caring, loving and kind.  The process of healing began.  Many weeks later, I returned home with home health care for a few months.

Within four months, I was walking outside a little at a time.  And, of course, I was receiving chemo again.  During this time, I was surrounded with care, love and prayers of my wonderful husband and family.  With the love, support and prayers, I felt like a warrior and winner at life.

My thoughts during that time were just  gratitude to be alive.  I tolerated the pain and discomfort of healing just fine.  When the going was tough, I would just live in the minute or 5 minute period at a time trying to enjoy what was going on at the time.  Being able to lay in a comfortable position and listen or watch television was the greatest blessing! I never went into the anger phase grieving over my cancer diagnosis.  I was just too happy to be breathing and be with the ones I love.

Later as the months progressed and physically I healed, I then had the mental torment of fear of dying.  I was terrified with the statistics of 24 months as the average survival time for this advanced disease. There was such a pain inside in my heart that I could hardly cope.  I knew I was going to have to develop coping strategies.

Since 1997, I have continued treatments.  I have had a length of time to practice my coping strategies where I am currently in this journey.  I decided quite awhile ago, that this disease may have my body, but it's not going to touch the quality and joy of my life.  I have control over that!

SUMMARY

 Diagnosed 4/21/97 3c, papillary serous adenocarcinoma, low grade ovarian cancer at age 48.

First Treatment:  Taxol, Carboplatin (1 cycle) sensitive, (5 cycles) of carboplatin/cytoxin, June 1997.

Second Treatment:  Carboplatin/cytoxin (3 cycles) not effective. Topotecan (5 cycles, not effective), spot radiation (11 treatments) effective, June 1998.

Third Treatment:  Radiation to the whole stomach (21 treatments) January 2000.

Currently:  CA125 low 200's, tamoxifen 40 mg. twice a day per MD Anderson Cancer Center.

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