After the Diagnosis

During my ER visit, I learned that the reason I couldn’t eat or sleep and I had been gaining weight while eating very little was that my abdominal cavity had been filling with fluid.  This is known as ascites.  Working in the medical profession, I knew what ascites was, but I had always associated it with end stage liver disease because that is usually when it appears.  But it can also be seen in tumor growth.  At it’s most severe, it can look like a pregnancy.  Mine didn’t look like that but I sure felt the full brunt of my organs being crowded into a tight space.  I looked forward to seeing the gynecological oncologist the following day in anticipation of ending my misery.  Actually, that day, I just wanted to be put OUT of my misery.  I didn’t want to have surgery, I didn’t want to have chemotherapy, I didn’t want to be “strong” and I didn’t want my life to be turned upside down.  But with this diagnosis it was.

I was 60 years old when diagnosed, and had the rest of my life planned out.  I had already been gleefully counting down the years to retirement–about 5 years to go at this point.  I would sell my house and move to the Pacific Northwest to be near my daughter and her family.  I would buy a condo on the seashore, enjoy early morning runs with exquisite views, watch whales breaching in the distance, kayak, volunteer in the community and take leisurely walks in the evening with the sun setting in all of it’s glorious splendor.  I would live a long and healthy life.  I had been healthy and active my entire life and there was no reason to believe this wasn’t going to continue.  But this is life, and bad stuff happens no matter what your plans are.  This is a formidable topic in and of itself and will be covered in a later blog.

A speaker at the 2018 Ovarian Cancer National Convention recommended that “the first thing a woman should do after receiving a diagnosis is nothing.”  Continue with your every day life, shop around for the doctors that fit you best and don’t make any immediate decisions, this female doctor encouraged.  Sounds like good advice if you’re shopping for a car or house, but when you are so miserable you can’t work or function at any serious level, forget it.  Gilda Radner of Saturday Night Live fame suffered through 10 months of symptoms, doctor’s appointments and misdiagnoses before finally discovering she had stage IV ovarian cancer.  By the experts own admission, ovarian cancer is most usually diagnosed in an advanced stage, and not until symptoms have become intolerable.  So, for most of us, you do what they tell you to do because there are not a lot of other options.

I prepared for my appointment with the doctor by searching “ovarian cancer” on the internet.  I remember 3 things I discovered: it is not very curable, there are better outcomes when treated by a gynecological oncologist (good!), and the chemotherapy drugs used to treat it are not as bad as some.  This gave me a false hope that I would not lose my hair, but at least it was a hope for awhile.

So the next day, Tuesday, I went to the appointment alone like I am used to doing.  I met my new doctor who I really liked.  She seemed young but aren’t they all nowadays? She was 7 months pregnant at the time, and I didn’t even notice.  She continued the charade that well, we’re not absolutely sure it’s malignant cancer and that they would first take a biopsy and then decide what to do.  Even I knew this was bunk and they were just trying to soften the blow.  She described the “debulking” surgery to me.  They would remove all of the female organs and any visible signs of cancer which may involve the diaphragm, mesentery and colon.  If the colon was involved my hospital stay would probably be longer than 4 days.  She said they had initially scheduled my surgery for the following day but the new charting program the hospital had been using was creating a problem and it might have to be postponed.  Her assistant was working feverishly at getting the problem fixed even as we spoke.  I knew about the new charting program which we had just started using at work and what a headache it was to the nurses.  It was not my favorite thing to begin with, and when I learned that it might just prolong my misery, I was getting ready to implode.  They worked on getting the problem fixed for quite a while, but ended up having to reschedule my surgery for FRIDAY! Now I am not a crying-type person, but the culmination of all I had been through the last month, the diagnosis and self pity I was going through finally hit it’s peak, and I broke down in tears.  Did I really have to suffer 3 more days with this just because of a freaking charting program? My doctor then said that the least they could do is remove the fluid in my abdomen so I could be more comfortable until the surgery.  So an appointment was made for Wednesday morning at one of our hospitals to have a paracentesis.  In this procedure a needle is inserted into the abdomen and the fluid is drained.  I knew many patients who had undergone this procedure so it was nothing new, but when it’s about to happen to you it sounds kind of scary.

The next day I reported to the appointment on time.  The wait seemed interminable. I finally got into the room and the nurse asked me bunches of questions, never taking her eyes off that damnable computer.  The computer program strikes again.  Finally, the P.A. arrived who was to perform the procedure–another woman provider, for which I was grateful.  She explained that they would use an ultrasound to find the biggest and most accessible pocket of fluid and find a target point for the needle.  I would receive some lidocaine in that area to deaden the pain.  I was nervous about this.  Before the procedure began, she and the nurse were joking and kidding around about some other employee and having a grand old time while I sat there fearful of the needles and devastated by my diagnosis.  It was like being at the grocery store and having the cashier and the bagger visiting with each other like the customer didn’t even exist.  Only worse.  And they knew my diagnosis.  That was a low point for me.  The P.A. did a wonderful job of completing the procedure in a mostly pain free manner, and successfully removed 2.5 liters of fluid from my abdomen.  On my way home I bought a hamburger to celebrate my hopefully renewed ability to eat something of substance.  I ate it, but didn’t eat much else the rest of the day.  I felt a little better but not how I hoped I would feel.

The healthcare system I both worked for and was receiving treatment through, has a great application that let’s you view your own lab results, doctor’s notes and summaries, and pathology.  When I was in the ER, I knew my lab results even before the doctor came in to discuss them.  So, the next day I looked up the pathology results of the paracentesis.  As I already knew, the pathologist determined it was “positive for malignancy.”  Nothing to do now but wait for Friday to come.


How It All Started

Although I am more than a year out from the start of what I used to call “a nightmare,” the time seems to be right to reach out to others.  When I was laying in a hospital bed following my surgery I searched the internet for anything I could find that might help me know what comes next, and what my chances were of surviving stage III ovarian cancer.  There are not a lot of personal stories out there from ovarian cancer survivors, especially ones that are encouraging.  I read comments of some women who were in various stages of recovery, but there was no follow up.  I figured they had all died.  So, for this reason I am starting this blog.  I have been through the diagnosis, the debulking surgery, 18 weeks of chemotherapy and 8 months of recovery and feel I have a handle on what you can expect during this time, although everyone’s experience will differ.  I’d love to hear how your own experience differs from mine.  As far as the chances of surviving this disease, we will make this journey together in real time, as I add to my blog.  But first, the beginning of my interrupted life.

The Diagnosis

Over the 4th of July holiday weekend in 2017, my brother and I flew to California to spend some time with our sister and brother-in-law.  As we are wont to do when we get together, we ate out a lot, and we ate a lot.  The first night we got there, we had a late dinner at “The Hat,” and I had a big pastrami burger and fries.  This was when my first symptom presented itself–acid reflux.  I just couldn’t lay down flat to sleep and tried to prop myself up with pillows. I chalked it up to the later-night eating that I wasn’t used to. We continued to eat great food throughout the four days I was there.  I loved it, but the reflux continued and another symptom popped up–constipation.  With all that eating I didn’t once have to go.  It continued when I got home even though I restarted my normal routine of drinking a fiber beverage each day.  At some point during the next two weeks I found myself unable to finish a meal.  I was just too stuffed even though I had returned to eating my regular, lower-calorie meals.  Red Flag! I love eating and usually can’t get enough! All of these things continued, and piled on top of each other. Even though I was eating much less than usual, my weight was going up.  When I started getting the chills and a low grade (99-100 degrees) fever, I searched my symptoms on the internet over and over again.  NOT ONCE did ovarian cancer come up.  Finally after about 3 weeks, I thought I would go to the store and buy a colon cleanser type drink to really flush out my system.  This was on a Saturday, planned that way so I could just sit at home and be ready to go.  It worked, but I still felt lousy.  Although I was not in pain, I was just miserable.  I stayed home from church the next day.  Sleeping was beginning to be a real challenge.  Late Sunday night, I woke up gasping for breath, and happened to have an oximeter on hand which my late husband had used.  I discovered that my oxygen level was below 90.  I finally came to the conclusion that something was seriously wrong with me, and knowing that I would not be able to go back to sleep, headed off for the ER at 2:00 AM on July 31, 2017.

When they asked me what the problem was, I said that it felt like I had a bowling ball in my belly.  Fortunately, there was only one other person in the ER and I got in right away.  They have a whiteboard in each room where they write down information about your caregivers, tests and such.  Under the diagnosis was written “rule out bad stuff.”  Blood tests were taken, I had a CT scan and then an ultrasound of my abdomen.  No waiting! A great time to go to the ER.  They figured it out pretty quickly.  I felt bad for the very nice lady ER doctor who had to tell me that it was “probably” ovarian cancer and they were setting up an appointment for me the following day with a great gynecological oncologist who would do the surgery.  Strangely enough, my initial reaction was not one of fear or crying.  Years prior, when I had a daughter at home and was called in for a repeat mammogram because of changes in the results, I completely freaked out.  The difference was that now, my daughter was grown and married, and my husband had passed away 6 months prior to my diagnosis.  There was no one depending upon me for survival.  One of my first thoughts was that after arriving in the next life, my husband petitioned the powers that be for my expedited return since he just can’t survive without a woman at his side.  Thanks a lot!

My next blog will focus on the appointment with the surgeon, my subsequent reactions and the waiting time before the surgery.  Thanks for joining me!