This week has been just another week in my life as a cancer “survivor,” a word I can’t abide. You know what you don’t know about us? Cancer affects you for a lifetime. Surviving, if you’re lucky enough, as I am, to be in remission is just the beginning of a lifetime of being a person diagnosed with cancer.
Let me say explicitly that I am grateful, so very grateful, to be in remission from bladder cancer. My treatment was successful, and my prognosis is excellent. One of my challenges to myself at the moment is that every time I think about cancer, I express gratitude for being healthy. Not everyone is.
Everyone’s cancer is different, and everyone has a different story to tell. But, once you have cancer you deal with the diagnosis for a lifetime, no matter how optimistic you are about the future.
Here are four things you may not know about a cancer diagnosis.
Most of us will have lifetime surveillance.
Despite the success of my treatment, I still have cystoscopies every 6 months. This is an invasive procedure and an expensive one. It is preceded by several types of urinalysis. In November, I will have another cystoscopy and a CT. If these are clear, then I may be promoted to yearly cystoscopies.
As a result of these tests and procedures, my doc has found two suspicious findings. These resulted in another biopsy and then an outpatient surgical procedure. Both came back clear. But, once you’re diagnosed with cancer, you have to pursue irregular results.
Scanxiety and generalized anxiety are a part of our lives.
Every time we’re scheduled for a test, a scope, a mammogram, we go through an arc. For me, a week or so before the test I feel anxiety building, and then for a week or so after the anxiety slowly descends. If you have to wait for results, then the anxiety lingers through the wait.
In fact, anxiety is a side effect of a cancer diagnosis. While many folks initially deal with depression after getting a cancer diagnosis, that generally declines. However, after two years anxiety tends to increase.
Side effects of treatments can last a lifetime.
This is not a part of my story, and I’m very grateful. I do not have longterm side effects from my treatment. But many do, from neuropathy to lymphodema, from hearing loss to decreased cognitive function and memory loss.
People with cancer lose body parts and suffer systemic injuries from treatments. From incontinence to loss of sexual function and chronic fatigue, people who’ve been through treatment may suffer for the rest of their lives.
Cancer is expensive and requires lots of paperwork.
I mentioned my testing and procedures above. In the past year my medical care has exceeded $20,000. Bladder cancer is the most expensive cancer diagnosis in the US. In addition to cystoscopies and CTs, I have had CX Bladder testing. This type of urinalysis offers great potential to those of us who face lifetime surveillance. If it proves as promising as it seems, we may be able to have a urine test instead of cystoscopies. However, the two CXBladder tests I’ve had cost $3000 apiece, and, insurance has refused to pay for them.
In addition, I live in Illinois, where our Governor is incapable of doing his job and has left us without a budget for the past year and, so far, for the upcoming year. Consequently, my insurance is not paying my bills for 52 weeks. That’s right, a year hold on my accounts.
This week one of my bills, a small one at that, was sent to collections. They are holding me responsible for paying the bill outright because of the budget impasse.
I spent more than an hour on the phone with the radiology office and insurance, and we have finally come to an agreement. I am no longer in collections (though I’ll believe that when I see it).
The point here is that our quality of life is impacted by the constant financial stress of testing and doctors’ visits. We spend an inordinate amount of time tracking down EOBs, making phone calls and tracking providers.
And, we spend a lot of money. A lot.
Gratitude and acceptance are the best coping mechanisms.
In addition to my host of docs, I also have a psychiatrist and a counselor. I am lucky to have found first-rate practitioners who work together to help me find some peace. The combination of medication and talk therapy have improved my quality of life.
From both I have learned that gratitude and acceptance will see me through. I will deal with cancer and its aftermath for the rest of my life. That’s simply my life. However, I’m a lucky person to have an aftermath. I am alive, and I am healthy, and despite all of the above I am grateful to be here.
This is the second blog I've written for my coffee shop project. My goal is to explore my community, discover new coffee shops, and blog while I'm doing it. Today I'm at Limestone Coffee and Tea in Batavia, IL. It's such a comfortable place to be and the Americanos were great. The best part of Limestone are the people who work here. Laura Vasilion, who blogs at Talking to the World recommended it.
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