|Ev three months after chemo. With hair|
and ready to get back in the saddle!
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My Cancer Journey is a little different than Jennifer’s, but still one that should be shared for educational purposes. September is Ovarian Awareness Month, so on that thought let me begin my story.July of 2011 I started to have some abdominal issues, with gastric pain, bloating, irregular bowels (I have always been very predictable in my body functions), fatigued, gassy, and generally just not up to feeling like myself. Phone calls and visits to my GP led to some regular medications for gas and bloating and pain related to that. Weeks later, I still had the same issues, was more miserable, and off to the doctor’s office again. New meds, blood tests, and a wait and see again. My appetite was not good; if you are bloated, having bowel issues, and gas you don’t want to eat.
Back to the Doctor again, this time for liver enzyme tests, to see if I had a liver issue, as my abdomen was swollen and painful. That came back negative. Then after having been free of menses for over a year, I started again, more bloated and painful. Off for more blood tests, this time for CA125( Cancer test), and an appointment for an X-ray.X-ray was inconclusive, as they couldn’t see in there, something was blocking their view. I overheard the tech and the doctor talking about sending me to the hospital for more tests. They called my doctor instead, who scheduled me for an ultrasound. Finally on Halloween, there was a diagnosis. Possible Ovarian Cancer.I went to a Gynocologist/Oncologist in Salinas. He did an ultrasound. I waited several days for another appointment with him, where he informed me that I had a huge tumor, and he did not have the expertise to handle the surgery for it. He sent me to another Oncology/Gyno doctor in Los Gatos for a consult. During this time, my abdomen continued to grow, gain weight, and my ability to move around and do daily activities without becoming physically exhausted and out of breath became worse.
We discussed surgery dates and prices for for the procedure and outcome potential. They would not do a biopsy until they removed the tumor, which had grown considerably in size, and I looked like I was carrying twins. Financially, our family thought this was doable. I hadn’t worked since October 31st; my business still existed but I cancelled all appointments with no idea when I would return. My business landlord was kind enough to not demand rents, but waited to hear what I was going to do and when I would return to open shop. The decision was made for a surgery possibly the week of Thanksgiving. I waited for confirmation of the date for this, but was told by the doctor that if for any reason I was too sick to function or felt the need, to go immediately to the ER at the hospital I was scheduled for surgery at and tell them to call him.I lasted until the Sunday before Thanksgiving. I was full of ascites fluid, and little known to any of us, including the doctors, blood clots. Saturday night and Sunday morning, I was having what I thought was congestion due to asthma. Sunday evening I asked to be taken to the hospital. I couldn’t breath.
The trip took a while. The hospital was in Mt. View, which is quite the drive from Monterey County. On arrival I needed to be wheeled into the ER; I couldn’t even walk the 100 feet from the car to the desk. They took me to an ER bed and triaged me quickly. After some tests to determine that I was full of blood clots and ascites, they made a room up for me, and the Doctor arranged to see me in the morning. I had specialists for lung, heart, and tumor checking on me, and a surgeon trying to figure out when I would be well enough to perform a much needed surgery. They put a screen in my heart via my neck to catch the clots, so I would not stroke or die. I was on blood thinners, which would complicate a surgical procedure for me. The decision was made I would have surgery the day before Thanksgiving. If I didn’t have surgery, I might die.
On the way to surgery, the anesthesiologist counseled me and informed me he had a better chance of me dying in surgery than making it, but he would do all he could to keep me alive and my brain alive. He hoped to talk to me after surgery. I have an allergy to demerol and fentynol, the two most common drugs used for surgery. The decision was to use polypropynol (the Michael Jackson drug) as that was the safest for me. I survived the surgery which involved removing a 40lb angry ovarian tumor, which was luckily encapsulated, and 14 lymph nodes. Biopsy came back with positive results for stage 3b/4 Ovarian cancer, It did appear it had not invaded my abdomen though! I was left in a drug induced coma, for about 36 hrs.I awoke after having been not the ideal patient or being very nice to family and friends. I don’t remember what I did or or said. I was under the influence of some some pretty powerful medications, and eventually weaned over to morphine, which is about the only hospital drug my body can handle without going into shock. I had fluid on the lungs, and I was on IV and oxygen. I needed two lung taps. I was moved from CCU to PCU, and then a private room with catheters and tubes to drain my belly, IV and nose tubes. I remained in PCU for a week. I remember being whisked away for CAT scans, ultrasounds, and having other machines for tests brought to my room.
Finally the catheter was removed, but the belly tube remained and they were trying to get me to use the facilities on my own. I tore a stitch over the second weekend of my hospital stay. The nurses didn’t think it was a big deal, it was a little wound, on the big wound. By Wednesday it smelled like rotten meat and didn’t look right. I had two huge hematomas in the surgical wound, which burst open and left an open wound the size of a dinner napkin. It was a mess, and it couldn’t be put back together with surgery. They packed it like a field surgical wound. They consulted with a wound vac doctor, and it was finally decided that would fix my issue. A little machine designed originally for combat veterans with battle wounds would be used on me to heal. I had a date I could possibly go home.However, hospitals being what they are, not necessary staffed by people who use the best methods of cleaning themselves between patients, I got C-Dif, a nasty bug given to patients by people with dirty hands. That prolonged my stay by a week and kept me trapped in bed, weak and helpless. Finally, a few days before Christmas 2011 I got to go home, with a portable wound vac system attached to me via tube and cords. They drugged me up good and sent me off in my daughter‘s little VW bug, on pillows and surrounded by pillows and blankets. I slept most of the way.I enjoyed a small group of family and friends for the Holidays. Wound Vac still attached. I had visiting nurses 3 times a week to check my blood, well being, and nutrition, and change the vac bandages and reconnect the machine to me. I could not do chemo until the wound healed and the vac was removed. It would be the first of March 2012 before I was healed enough to have the vac removed completely and finish healing with regular bandages on my belly. Middle of March a chemo port was installed, and a week later I began my chemo of Carboplatin and Taxol. Every third week thru the first of July I received my chemo. Week before chemo it was time for blood draws and waiting for results to be sure I was well enough to do the next chemo.I had to have steroids orally the day before the first chemo orally, after that it was via the chemo catheter, along with a cocktail of things to relax me, calm my restless legs, and kill the cancer.Always 24-36 hrs after chemo I would experience excruciating pain in my bones throughout my body. Hydrocodone did not help with the pain. So for 24 hrs or so, I would go to bed with a heating pad and as much pain med as I could handle, in a dark room and in fetal position it until the pain subsided.There were a plethora of oral drugs given to me or on hand to handle all the symptoms from the chemo meds, pain meds, and steroids. Everything from stool softeners to sleep aids, to pills for stomach discomfort and vomiting. Eating was a chore. Things sounded exciting or tasty until I got them, and then a few bites later I was done. Going anywhere became a chore. Being bald over my entire body felt foreign and alien. Being too weak to walk from one part of the house to the other was hard, no concentration to read or watch TV, except light programming like daytime talk shows and such. Not being allowed to touch my horses or go places was hard. Driving was out of the question; someone had to take me to get meds, or to doctor appointments or chemo.By the end of my chemo program, I was anxious that the cancer would be gone. I didn’t know if I could handle another round, and radiation was supposed to be in my future as well. The first week of July 2012 I was done with chemo. It was determined I would not need radiation. I was, for the time being, Cancer Free!It has been an uphill climb to resume my life and gain strength. Today I am still ovarian cancer free. I have had my BRCA tests done, and I am negative. This does not mean I can not get cancer again, or that I will survive another 5 to 10 years cancer free. The statistics for ovarian are not promising, but I feel fairly certain, and so does my oncologist, that I should remain clear.
I urge everyone to be proactive in their health care. Persist if something doesn’t seem right. Ovarian is a very silent killer, as there are few symptoms, except those I experienced, and most doctors don’t go to that diagnosis quickly.
As for me, I'm doing OK. I still get tired way faster than I wish I did. I do get out a little; today it was lunch and Costco. The rash on my hands seems to be a little better, and I've slept better the past few nights. My hands are a little shaky, but I think that is part of a general shakiness/weakness I've felt since I started chemo. I sometimes hear it in my voice, and I'm generally clumsier and fumble things a lot. I just hadn't specifically looked at my hands to see if they shook until Michael asked about it today. No numbness or tingling, though, which would indicate neuropathy, so that's good.There is life after cancer/chemo. Things will never be the same, but the time spent slowing down to fight against cancer makes our life more meaningful to us, and our goals more within reach. I have learned who I can trust, who my true friends are, what I want out of life, and that simple pleasures mean more than anything, with those you love.--Ev Henry
Now to make sure I get a lot of protein and fluids in me in preparation for chemo #6 on Wednesday!