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 I don’t remember being told I had cancer. I just remember waking up knowing it was so. In December 1998, I went in for my annual exam. Reluctantly, of course—as we were busy wrapping up end of year business and getting ready for our annual getaway. But it’s a good thing I went. My physician felt what he thought was a 4cm ovarian cyst. “Don’t worry about it,” he said. “Ovarian cysts are very common. Just come in for an ultrasound when you get back in town.”
Naturally, we did worry about it—a lot—and spent way too much time on the Internet searching for more information on ovarian anything. A basic search of “ovarian” resulted in over 1 million sites. Narrow it down to “ovarian + cyst” and we got tens of thousands of sites. Narrow it further to ovarian + cyst + photo and we got a few hundred sites. Now a few hundred is better than over a million. But after about 30, we were discouraged. Too much information. Not enough of what we needed.
Less than a week later, we went in for an ultrasound. Knowing that the technician wouldn’t be able to say much, I asked my radiologist father, and rad onc brother what to look for on screen.
“A clear area, one that looks very dark, is good news,” they said. “A cyst, a gray area, one that looks cloudy, is bad news—a tumor.” Well, my growth was both clear and cloudy. And by the look on the technician’s face, very bad news. It had grown to 10cm.
But because my CA125 was normal—the blood test for ovarian cancer—my doctor was confident that my tumor was benign. Besides, it couldn’t be cancer. I didn’t have any symptoms. Sure my lower back hurt. It had ever since a high school sports injury. And yes, I was tired at the end of the day, but who isn’t?
Well, my 4cm cyst, turned 10cm benign tumor was actually clear cell ovarian cancer—one of the fastest growing and deadliest forms around. My husband, who was told I’d be done in two hours, was given the news. And the news at that time held no answers.
No answer as to how far the cancer had spread. No answer to if I would even live. Again he was asked to wait another couple of hours while they proceeded to scoop me out and remove a series of lymph nodes, testing each to see just how far the cancer had spread.
My initial reaction upon waking was a nonreaction. I was too swept up in pain to care much about anything. But on the second night after surgery things were a little clearer. I was off the morphine, was tucked in for the night, and then it hit me. It was just me and God and cancer in a dark hospital room. What was I supposed to do with this?
The next morning my doctor told me that I really had dodged a bullet this time—that the cancer was contained within my right ovary. But that due to the severity of clear cell, I would have to go through chemo, but not until I healed from surgery, which would take about six weeks. My chance for survival was 80 percent.
And so, on we went to the process of recovery. One would certainly think that the removal of 29 body parts would equate to a few pounds lost. But in all actuality, the six extra pounds that followed me home from the hospital were just the beginning of the 30 I would gain by the time chemo was over. Gain weight, you ask. Yes. Steroids and comfort food.
During my first meeting with the oncologist we went through the basics, toured the chemo lounge, met my nurse, became familiar with the surroundings and received my first set of pre-chemo drugs. We also received the news that with chemo the chance for clear cell to recur was 20 percent, and if it did the opportunity for a cure was minimal.
Hmmm. Same information I had received earlier, just packaged a little differently.
Soon we were back in the chemo lounge, but this time for real. We were ready … sack lunch, water bottle, a couple of good books, cell phone and a heating pad for my right leg that was starting to bother me. Just as my nurse was ready to start my IV, I mentioned my right leg. The pain and the swelling. Then everything stopped. A blood clot, they thought.
So off to radiology we went for an ultrasound. My leg looked fine, so the tech opted to scan my belly. There is was. The culprit. Another 10 centimeter mass. But this time it was black as night. A good sign, a cyst. It was actually a post-operative lymphocele that was the result of my lymph channels sealing up after all those lymph nodes were removed, lymph fluid that did not know where to go, and as such decided my belly was as fine a place to be as any. I had one on each side.
Now lymphoceles aren’t particularly dangerous, and they can go away on their own, but mine was so big it had to be drained … twice. Each time removing three large syringes worth, or 150 cc.
The actual infusion of chemo was pretty uneventful. As was the next day. But when day three rolled around, I never could have imagined the pain. The nausea. The totally crippling effects of these drugs. While the whole point of chemo is to kill rapidly growing cells, this first round about killed me. Not really, but it felt like it. I was reduced to a helpless, pathetic lump. I could not move, I could not talk, I could barely whimper.
After the first round of chemo, life seemed like it was getting back to normal— deadlines, stress, running, etc.—when one day, day 12 to be exact, a dear friend stopped by. “Oh, look” she said, “you still have your hair.” Proudly I reached to the nape of my neck, gave it a tug and was about to say, “Well, yes I do,” when in my hand was a tuft of hair. My heart just sank. “You thought you’d be one of the lucky ones,” she said. One of the 1% who doesn’t lose their hair she meant.
So that night our hair plan went into effect. My daughter Asti made about 20 little braids and cut them off. If I couldn’t have my hair I wanted to give some to various family members who could.
Then, in preparation for it all leaving me, Asti proceeded to give me a short haircut. Two reasons behind this, the first getting used to shorter hair. The second, preventing such a mess when it all started falling out. That was a Monday.
By that Saturday (day 17 oddly enough as predicted by my rad onc brother) hair was everywhere. It was messy. It was maddening. It was time for it all to go. So we dug out the clippers and off it went.
Then Asti put a knit skull cap on my head, went off to a babysitting gig and told me not to look until she came home. Sure. This was one reality I needed to face immediately—and alone.
I took off the cap. My heart sank again. This was really ugly. My head was so splotchy—bare where hair had fallen out, darker where the leftovers had just been shaved. What’s a girl to do?
A clean shave. A clean razor shave. I lathered up and started after it. I really wanted a clean head so I dug deep. And drew blood. It took four razor blades and more than an hour to finish the job. And when it was over, I decided to continue primping with a facial mud mask. Anything to make me feel better. Then I put the knit cap back on and went to bed.
The second round of chemo was better. Rather than spending all my time in bed, I took over my husband Les’s big green chair. I could be more social this way. Moan within hearing distance. They adjusted the post-chemo meds to ease some of the bone pain, and we learned to deal with it a little differently, too.
Primal scream therapy. I would scream. Then Asti would scream. And Les would scream. Then we would all scream together … and the cats would run.
When it got really bad, Asti would sit with me in the big chair. I had asked how she was doing with all this and she responded with, “Mommy, you promised me you wouldn’t die from this and you’ve never broken a promise. Let’s just get through it.” Wise beyond her then 16 years.
I looked outside traditional medicine for help during the next few months. My mainstays included weekly acupuncture with needles placed symmetrically, and one key needle in my belly for nausea. Dr. Cheng also gave me dried herbs to add to water and drink as tea three times a day. Hardly tea. I fondly referred to it as pond scum. The herbs were to keep me healthy while my white blood cells were being knocked down. They did that and more. Prior to my fifth round of chemo, my whites were down to 2.1. If they went below 2.0, chemo would be put on hold. There was no way I was postponing the last session. So Cheng gave me a new mixture of herbs and grew my white count from 2.1 to 3.9 in 10 days. Aha. Real proof that all my extras were working.
In addition to acupuncture, I had reiki and healing touch massage the day before each chemo treatment and the day after. What a huge difference. Even with all the extras, the effects of each treatment were so different. It was hard to prepare.
But then, it was over. Now what? Not only was I bald, but I was large and bald and without energy to do anything about it. I found a naturopathic doctor who, in an effort to detoxify my body, put me on a yeast-free diet.
No yeast, no dairy, no coffee, no sugar, no alcohol, no chocolate, no fun. But it worked. Within a few days I was full of energy and on my way.
Now the question I think asked by every chemo patient is, “When will my hair grow back?” Well I decided to document this with weekly photos. From the last chemo to my first haircut was 25 weeks. Once hair gets growing, it doesn’t take long to look human again. But until then, whew! Chemo patients have got to be the foundation for all monster/alien creations!
When people ask how I made it through all of this I tell them my faith, family, friends and fantastic care team.
When newly diagnosed patients ask for a few pointers, I tell them to keep their sense of humor and then give them a dose of mine. Like our Christmas card that year with me as a Christmas ornament and Jingle Bells rewritten to “dashing through chemo.”
And my biggest piece of advice is to decide that you’re going to live and then all rest will fall into place.
 
Karen Meyer's Christmas Card
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