Dear Senator Ernst and Grassley,
I’ve never had cancer, but I have deeply loved someone with cancer and it is terror. The ability to work, to play, to function – all stops. There are brief moments of me pretending she isn’t sick and that everything will be fine, but cancer is never more than an arm’s length away. There are attempts to make her smile, although I know it probably won’t work because cancer is more than terror to her; it is her life. Sleep becomes a drug, a way to forget as often as possible, but there is never peaceful rest.
In 2012 my wife Tisha was diagnosed with two types of thyroid cancer. The doctor’s said she was “lucky.” Can you believe that … lucky? She was diagnosed with both papillary and follicular carcinoma. She was “lucky” because the cancer was slow growing, treatable, with a high survival rate. “If someone is going to be diagnosed with cancer,” they said, “this was the cancer to get.” Maybe she was, as they stated, “lucky,” but still I hated them a little for saying this way. She was scheduled for surgery and radiation treatment. The terror never left, but there was hope. Tisha had great doctors, and she had insurance.
Those months were a blur of body scans, biopsies, and bloodwork. Surgeons removed her thyroid, and after two nights in the hospital, released her on Easter Sunday. She watched the children have an Easter egg hunt. Everything seemed to be going relatively smoothly, until a notice arrived in the mail stating that outpatient services had reached their annual payout. From that point on, all of Tisha’s medical bills would need to be paid out of pocket, and she had yet to receive radiation treatment.
As she prepared her body for this treatment, Tisha underwent a strict diet which would allow the radiation to absorb into any remaining abnormal tissues to kill it. Tisha had already postponed her second semester of nursing school; now, the diet was making her too weak to work. She took leave under the Family Medical Leave Act, but because she was no longer working her employer was no longer contributing to the cost of her health insurance. We began paying hundreds of dollars a month to an insurance policy that was no longer paying for her care.
We had managed to save $10,000 dollars to buy a house together, but it was quickly disappearing. I was terrified we would be depleted of all savings before my wife would be saved. We applied for Medicaid, but despite having only one family income, we made too much money in the months prior to her diagnosis and were denied. We would have to pay for the treatment out of our own pockets. We were desperate.
Tisha got her radiation treatment by walking into a room and having a nurse, in a leaded suit, hand her two pills with a set of tongs. The nurse instructed her to swallow them and stay twenty feet from any living thing for fifteen days. Our devastated and questioning children went to one grandmother; our dog Steve went to the other. For over two weeks I sat in the kitchen talking to her through a doorway and over a dining room table. Sometimes I just sat on the phone with her not talking because her throat was sore and burning from the radiation. I never did learn how to comfort her when she cried because she missed the kids.
The isolation became routine. We slept on opposite sides of the house. We couldn’t share a bathroom, so I used the restroom a mile down the road. I made her meals, chicken and homemade toast with olive oil, every day. I don’t remember where I showered or even when I found the time to shower. On the 15th day Tisha was released to join the world, again. She went to the hospital and had a body scan that revealed her to be clear of any cancer. We went out to dinner, and for the first and only time of my life I drank. I drank so much.
The bills kept coming, and I put them in piles where we tried not to think about them. We were grateful for the care Tisha had received, and it felt strange to be angry about the cost of something that saved our family. We then got the bill for her radiation treatment. Each radiation pill cost over $15,000 dollars. Every penny we had managed to put together for her care would not be enough.
If it had not been for the support of the amazing people of Sioux City, who selflessly donated money to my family after my little girl wrote a letter to a morning radio show asking people to come to her lemonade stand to support her mom, I’m not sure we would have made it. If not for that lemonade stand and the news coverage it created, I’m not sure if the hospital would have forgiven much of that debt.
This was supposed to be the easy cancer to treat and survive.
The following year Tisha successfully completed her nursing training, and I was there when she received her nurses pin. I watched her repeat the Nightingale Pledge: it is as follows
Before God and those assembled here, I solemnly pledge;
To adhere to the code of ethics of the nursing profession;
To co-operate faithfully with the other members of the nursing team and to carryout [sic] faithfully and to the best of my ability the instructions of the physician or the nurse who may be assigned to supervise my work;
I will not do anything evil or malicious and I will not knowingly give any harmful drug or assist in malpractice.
I will not reveal any confidential information that may come to my knowledge in the course of my work.
And I pledge myself to do all in my power to raise the standards and prestige of the practical nursing;
May my life be devoted to service and to the high ideals of the nursing profession
I ask you now to live your life to this standard. Do no harm. As you ponder a health bill that would see nearly 24,000,000 Americans removed from ACA, nearly 250,000 of those being Iowan’s. I beg you to stop considering this Senate bill. There are real people – real lives at stake, and if this bill passes… they all will be living in terror.