My terrible Summer of 2011
Yes, I have been MIA for a while. I am just now getting back into being able to spend time posting.
I had a horrible summer in 2011 where I was in and out of the hospital, some of it very unexpected.
An Ultrasound and a “D and C” in April showed hyperplasia and a polyp, but no cancer.
In May 2011, I went in for a total hysterectomy – and they found not one, but two totally different types of cancer.
Endometrial cancer with only 10% myometrial invastion, Figo rating Stage 1. So it was a brand new cancer.
And also, a low grade Endometrial stromal Sarcoma. That big thing that showed up on the ultrasound was not a fibroid but a
rare stromal sarcoma that was bigger than a babies head. About 11 cenitmeters.
You know how dialated they want you to be to deliver a baby? Well, it was bigger than that.
And it was there way back 6 years ago when I had the stage one breast cancer – but it was only 2 centimeters on that CT scan.
So it was sitting on my uterus all those years growing and no one suspected it.
Then in July 2011, after I was healed from the first surgery. we decided to go in and get some lymph node samples.
An easy, overnight Robot surgery with the DiVinci robotic machine.
Just a few holes in my stomach and I could go home the next day.
Not a chance. I was in the hospital 21 days.
Well, it turns out I am one of those people who creates a web of scar tissue when a surgeon touches their innards.
It was very hard for the doctor to see where the robot arms were going. My previous surgery created lots of scar tissue.
They got lymph node samples, scar tissues samples – and then my small intestine got punctured.
If you aren’t familar with having a small intestine punctured – well, it can kill you.
Your abdominal cavity is sterile. All the stuff your stomach and body makes after you eat stays inside your intestines.
But if that stuff leaks out into your abdominal cavity, it is really bad. Its a toxic state.
So instead of feeling perky and ready to go home the next day – I was curled up in a ball in my bed with sweat pouring off me.
The doctor figured something got punctured, and took me off all food immediately. And started me on 3 different antibiotics.
About one week of horrid tests.
Two horrid Barium tests. One where they tried to make the stuff taste like coconut.
And another where the barium was so bitter that I refused the test.
The head of the radiology came in to try to help me – and I told him he needed to place a complaint with the pharmaceutical company. I asked
if I was the first person to taste the barium and refuse the test. He said No, people refuse to do it all the time, and they complain to
the pharmaceutical company about the taste but it does no good.
I was supposed to drink about eight bottles of bitter barium. I got about a half of a bottle down, and they got me to drink more coconut
flavored barium. Then they stuck me in a CT scanner – and they found the leak.
Oh, but not without a test where they stabbed me in the stomach to get fluid samples. Yes, through my abdominal wall and my stomach muscle.
Novocaine doesn’t help much.
I now know what it feels like to be stabbed in the stomach with a steak knife.
My doctor calls me at 8pm to tell me she will be there in an hour for emergency surgery.
She comes to my room, and she sees my Catheter. The urine looks like fresh squeezed orange juice.
Her face turns bright red and she is fuming. She wants to know why none of the nurses called her..
I tell her I have told them three times that day about the strange urine in my catheter.
The toxic substance from my punctured intestine had leaked onto my bladder, created a hole in the bladder, and it leaked out into my catheter.
Which turns out to be a Big Blessing in Disguise, because even though I now had a hole in my bladder – alot of the leakage from my intestine
has not stayed in my body. Its in the catheter bag along with bladder tissue.
At midnight I was in Surgery with my Oncologist, a Urologist, a Gastrointestinal surgeon (or as a friend calls him “The Gassy Doctor”), a Kidney
Specialist, and then also a Heart Specialist.
After they patched up the hole in my intestine, and the hole in my bladder and the surgery was ending – my heart spead up and raced and then
slowed down dangerously slow.
The Heart Specialist explained that they had rinsed my Abdominal Cavity out with a Sterile Liquid about three times to make sure there was no
intestinal fluid left were it shouldn’t be. And because there is so much water in your system, it can throw your electrolytes off causing your
heart to race.
My oncologist seems to think it was because they put some kind of IV or tube threw a vein, and she thinks it touched my heart causing it to
I wonder if they gave me something with epinephrine which I am not supposed to have because I am hypoglycemic.
Whatever the cause – having my heart freak out landed my in ICU on a Respirator.
Thank God I was only on the respirator for 12 hours, and in ICU for two days. I was in a special room where they monitored my heart for another
2 days. My Heart never freaked out again. So they are pretty positive it was not a heart problem, just a result of something they did during
All in all, the Robot surgery that was supposed to be an easy overnight stay – put me in the hospital for 18 days.
An IV drip that looked like it was filled with milk for about a week. Then liquids, then chopped food.
I had to be on “real food” and “off antibiotics” for 3 days before I could leave the hospital.
I was so happy to finally get out of that place.
I am back to my normal routine and normal life.
The Doctors said it will take a few more months for my Intesine and Bladder to completely heal.
There were no lymph nodes involved, so after that, we will look at doing a full body PET scan, and keep a close watch.
Since the endometrial cancer was only 10% myometrial invasion – and they usually don’t recommend chemo or radiation until you are close to 50% – it looks
like they pretty much consider this cancer “case closed”, but will keep a watch on it.
The Endometrial Stromal Sarcoma is kind of weird. They are happy there are no lymph nodes involved. But there are only 700 cases of sarcomas in the USA
per year – so this is all very strange. I was told by my oncologist that sarcomas usually don’t come back – but if it does come back, it comes back
with a vengeance. And there is no test to tell us which kind of sarcoma it was. All we can do is take PET scans and watch it.
So I hope you had a better summer than I did.
Since most of my summer was spent either in the hospital or recuperating at home, I am looking forward to a fun Fall and Winter.
I am hoping to have a really fun Summer of 2012 to make up for the summer of 2011 that I missed.
And I really want to write and post again on www.donnagrayson.com, if I can find the time.
***An FYI for the reader: Of course, all of the above is my own personal experience – and it is not intended as medical advice as I am not a doctor.
The typical disclaimer applies: consult your doctor… and if necessary get a second opinion.