A year ago this morning my wife Linda emerged from surgery to remove a cancerous tumor at the base of her pelvis. The surgeon also repaired a hernia resulting from several previous surgeries. For 7 years my wife has been an ovarian cancer patient. It has not been an easy road.
Our hopes were lifted when the surgeon let us know that a colostomy was not necessary, and that he’d gotten the tumor out with a colon resection. Success for now. Yet there is no way to really know if you’re cancer-free until you take more chemo, pass the tests and can move on in life.
Not so fast
It is never easy when cancer comes back, as it has several times with my wife in the last several years. In some ways you get better at dealing with it––if only because you don’t get your hopes so high that life will ever return to normal.
She’s being sustained with Doxil now, after a short and somewhat failed experiment with tamoxifen, the breast cancer drug that apparently doesn’t work all that well on ovarian cancer. But America had run out of Doxil for several months when my wife came out of surgery, then the drug came back on the market in March. By then her cancer had gotten active again.
Let’s not lie to ourselves: taking all these drugs over the years adds up. My wife is like a marathoner who has done so many races a normal stride isn’t possible any more. So we take it slow to let her neuropathic feet adjust to sudden movement and adjust our activities to accommodate other side effects as well. But she’s still trucking. The dual tarsnakes of cancer and chemotherapy have not taken her down. Nor me.
High altitude and a tiny tent
This is a woman who with very little training hiked from 8000 feet up to 12,800 feet and back in the Maroon Bells of Colorado. She’d had bunion surgery only the month before, and she nearly collapsed with altitude sickness on the way back to camp. But she’s so tough we kept going. All it took was the rest of my water and a lot of coaxing.
Then we huddled together in a tiny tent for 7 hours while a massive Colorado rainstorm pummeled the valley where we camped. We talked and laughed and cried and got angry and finally emerged from the tent under a canopy of shining stars. That’s when I knew we could be married. Through thick and thin.
So it hasn’t really surprised me that she’s survived cancer for the last 7 years. We’ve survived it together. Just like we survived 7 hours in the tent. On summer nights we still sit out and look at the canopy of shining stars.
And life goes on beneath them.
Loss and grief
A year ago on January 2 we also lost her father to complications from heart disease. Only a week after her cancer surgery we checked her out of the hospital and the very next day she insisted we drive over to the hospital where her dear father lay in bed hooked up to who knows how many wires and a life support unit. He made it through Christmas and New Year’s Day, but passed away on January 2, 2012. We had Christmas together by his bedside last year, with his second daughter who is a violist for the Chicago Symphony Orchestra playing Christmas carols on her instrument. The nurses all appreciated the atmosphere.
We hoped to have time recover from her surgery and the loss of her father in the new year, but storms were brewing on a different front. The company where I worked had lost some critical business from the largest account and things were getting tight. Pressure built to bring in new business but it didn’t come in fast enough to stop the bleeding. The President warned that without a miracle someone would have to go. It turned out no less than 3 employees departed the firm last year.
It had already been an edgy year living with the secret of my wife’s cancer. As an employee who has had trouble before with small employers who express nervousness about having a cancer patient on their health care plans, I had kept my wife’s illness a secret from the day I was hired. After all, in my final hiring interview the President had said, “The only reason we can offer these benefits is that no one on the staff has had cancer.”
It was too late to turn back, by then. So, rather than complicate things, we kept my wife’s cancer a relative secret. I just wanted to do my job, and did it well, earning a continual series of marketing and public relations awards for the projects I have led and collaborated on.
But in early April the news came that my wife’s cancer had again returned. This really was another shock. Fortunately I was home for lunch to take the call in case the news from the test was bad, and it was. I called into work that Tuesday to let them know I needed half a day off for a personal day, the first time I had ever done that.
The office wrote back an email that said they wanted to know how they could help, and they seemed sincere. So I prayed about it and told them I would like to meet with them the next morning to discuss things. It seemed like the right time to let them know my wife was going back into treatment. Keeping the secret through the previous fall’s chemotherapy treatments had been rough. Yet my wife still made it to a couple company functions to show her face. Her brave face.
Na na na nahhh…hey hey hey…goodbye…
But the day after I let the company know that my wife had cancer, they let me go, citing differences over office policies. I had a few high-powered lawyers look at the legal ramifications of what they’d done, and who wanted to take the case, but it is not in our family’s nature to sue them or any other employers over the years who have pulled similar stunts. Two others had either tried to cut off our right to be insured or create circumstances to make me want to leave. It’s not really a surprise, you know. It happens to people all the time. Yet suing a company is an ugliness my wife and I have simply decided we do not want in our lives. We’ve had doctors and nurses make mistakes, too. I think of one Easter holiday when we sat in the hospital watching chemo leak from the port in my wife’s stomach. The doctor came in looking like his career was over. We only wanted things made right.
Small business romanticized
It’s time for some hard truth: the world of small business (and medicine, for that matter) is not the pretty picture painted by politicians who tend to romanticize small business owners as heroes for ideological gain. You hear it all the time, politicians blabbing on about how the so-called “job creators” are saints for taking on the burden of employing others. They go on to complain how beset they all are by regulations, tax laws and other obstacles to success. Well, I’ve run my own business before, and the people with whom I collaborated or hired to do the job were not some commodity to be traded off or dumped at will. Without them, the business would not exist. So it is my belief that the perspectives we sustain on labor and ownership in this country are somewhat skewed.
I say it is ambiguous laws, not excessive regulations that make it hard for small businesses to operate by refusing to give them the clarity to effectively hire and sustain their companies. The same company that haggled me over office policies also flaunted independent contractor status with an “employee” who really did not work there, yet had a desk, phone, computer and office like the rest of us. It literally happens all the time. But you see, it’s the American Way. Business people want to have their cake and eat it too. They want to play by some rules that suit their needs, and dispense with those seemingly inconvenient rules that are too hard to manage.
Clear the decks
Our country could start by altogether removing the burden of health insurance from businesses large and small. There’s no reason why health insurance should be connected to your place of employment. None at all. Instead these poor (and rich) companies spend probably 30% of their time farting around with benefits and such because of the huge mistake America made years ago by letting an experiment in benefits become the norm.
Bring on the public option, I say. It will save American business billions in wasted “man-hours” administrating health insurance for employees, and take away the costs of paying for it too. At least Obamacare is a step in the right direction, ultimately removing pre-existing conditions as a disqualifier for coverage while raising the age of covered family members to 26 as well as a host of other benefits. It’s a step toward normalcy and a level playing field for everyone.
Different rules = difficult circumstances
The rules for employment and insurance are different for employers under 20 people. Go ahead and find out for yourself, if you like, but I’ve read the laws governing insurance and employment for small companies and they really are ambiguous. If the laws for employment and insurance were clear in protecting either the employee or the employer that would be fine. But they are not, and that leaves employers and employees in a netherland of disagreement over who owns what rights. It’s a disgrace of quasi-favoritism, authored by politicians without the guts to provide clarity to the situation because they constantly try to play both sides of the fence, ingratiating themselves to business while trying to mollify the voters. It’s bullshit.
All told the stress of keeping going during all the change and strain––including being primary executor for my stroke-ridden father’s care––has been quite a bit to handle.
I tried to run and ride through all these challenges, and being out of work gives you a certain degree of freedom, but it is the type of freedom you don’t really want.
I do have a strong faith in God though, and can tell you that a trust in that relationship takes some of the pressure off. As such, many things have happened to help us through this strange year. I do not hesitate to call them miracles, because to us they were miraculous; in substance, timing and grace. You’ll have to trust me to that level of detail, because to delineate those miracles is to commit a breach of trust to those who have helped us, often without being asked, and that is how the kingdom of God often works. It is at once humbling and inspiring.
The road to salvation, of sorts
While my running and riding helped relieve the stress and keep me sane, I started to notice a strange effect on group rides, and when I tried to race. My mind was not capable of fighting through challenges as it normally likes to do. It felt like I had Post Traumatic Stress Disorder (PTSD) where situations of stress shut down my ability to function.
On long rides when the going got tough I would hang for a couple miles but ultimately did not care if I stuck or not. It was like there were too many emotional parallels between the stress of competition and the stress of life. My mind chose on its own not to double its burden. Same thing with running. I could compete with myself but not with anyone else.
One crazy attempt at racing
The lone criterium I tried to ride turned into a crazy attempt at riding off the front in the early going. I was like a magnet being driven off the front of the peloton the first two laps. My fitness was good but no one can do that, just ride away from the pack! Insane. When I pulled over after two laps my cyclometer showed an average speed of 24mph but my legs were torched. I pedaled to my car, threw the bike in the back and drove home with my cleats on, shaking my head the whole way. “Enough of that for now,” I said.
The anxious mind
Anxiety and depression act that way on the human mind. Stressful situations and chronic anxiety force you to enter life through a new corridor. It felt like I was riding through a tunnel of ambiguity even as the riding miles piled up. 1000. 2000. 3000.
Then fall came around and I was really physically fit, with weight down to 165 and feeling healthy. I’d landed contract work and was getting job interviews. It was only a matter of time before something clicked. I wanted to get back to work for a hundred reasons.
And then the bike wobble crash happened on a hill in Wisconsin. That meant surgery and recovery and working through the stress of being injured. Yes, folks, it’s been quite a year.
Today is 12/12/12. Supposedly some sort of lucky day. Bring it on. This is one guy who would appreciate a little luck to go with the grace that has been shed on me. Bring it on.