07 October 2013

Managing Cancer With and Without Health Insurance

This week we heard about our government shutting down. The Republicans are opposed to the Affordable Care Act - or ObamaCare. I think though that they are hurting their party by their opposition. With healthcare available to those that couldn't afford it in the past, the Democratic party will gain more supporters, right? Eventually, something's got to give. And hopefully, we can have affordable health care sooner than later. And that's what I wanted to talk about. Healthcare and how important it is, not only because we can get the much needed care we all deserve, but because of the emotional effects of it as well.

 As you all know, I have had three rounds of cancer. The first time was 20 years ago, back in 1993. And then in 2011, I was diagnosed with two types of cancer, just 6 weeks apart from one another. Colon cancer and breast cancer. The second time with cancer, I was so much calmer, so much more "ready" for the battle. I took my cancer in stride. I was going to fight this with all I had. And I did, and thank God I'm here today. But these past few weeks while hearing about the government shutdown, seeing people's posts on Facebook about finally having a chance to get some medical coverage, well, it had me thinking about myself, and my battles, and I came to a realization about my fight with cancer: my diagnoses with cancer in 2011 was much less traumatic, even though the cancer itself was much more extensive than my first battle, and this was all because of the fact that I had health insurance. I had no medical insurance in 1993.

 When I got diagnosed with cancer the first time, I was 34. and a mother of two children - 6 and 12 years old. I was working as a teacher at St. Gregory Hovsepian School in Pasadena and we were not offered any benefits at all. My children's father freelanced as a commercial photographer. It's hard enough having your own business. And with two children, we couldn't afford health insurance. My cancer diagnosis was terrifying. I didn't know anything about breast cancer - but believe me, I learned quickly. I went to my primary care physician after symptoms, he sent me for a diagnostic mammogram, and when it was determined that I needed a biopsy, he sent me to a surgeon he knew of. After the biopsy came back positive for breast cancer, that's when  reality hit. How would we ever be able to pay for this? Of course we would do whatever we could, but what was all this going to cost us? My doctor was a godsend. We needed to find a surgeon. He made calls and explained my situation. He had a patient that had no insurance and she needed surgery. Could they help us? He found a surgeon for me, and I went to see him. Even though they had found the cancer early, and it was Stage 1, this surgeon suggested I have a double mastectomy because chances of recurrence would be greater because of my young age. I was ready. I gave my okay...just do it! I just wanted it out of my body. I had children to raise. And here was this doctor who was going to help me....after all, beggers can't be choosey, right? I had no insurance. Who was I to challenge his medical opinion.

 It was my mom that insisted on a second opinion. I was resistant. It wasn't until just this past week that I realized WHY I was so resistant to that second opinion. After all, this is what I tell so many people that get diagnosed and ask my advice. Seek a second opinion, or a third or fourth opinion til you find a doctor who you feel will help you regain your wellness. So what was so different for me then?  Simple: No medical insurance. As a young mom, I was worried about how this was all going to impact the family. My healthcare was taking food out of my children's mouths. At least that's that I felt like. I felt this degree of guilt. Going to a second surgeon was going to mean another consultation fee, another bill....and after all, didn't I just want the cancer out of me? So what was the point?

 But there was a point! The point was that there are different methods of treating. A surgeon will treat by cutting. My mom took me to an oncologist. He understood my fears, talked to me about options and treatments. I will never forget Dr. Tchekmedyian. He refused to take money from me. I had to pay for my labs and my radiation therapy, yes. But visits with him were gratis. He is an angel. We decided that we weren't going to go the route of mastectomy, but I still had to undergo surgery and then a six-week course of daily radiation therapy. Dr. T would be my oncologist, and the first surgeon I had gone to see (the one who wanted to do a double mastectomy), he would perform the surgery. Now all we had to do was set the date. 

The surgeon gave me a discounted rate of $6,000 to perform my surgery. But the hospital didn't want to admit me because again, I had no health insurance. They told me to go to the county hospital that admits everyone. But if I did, I wouldn't be able to use my surgeon. We had to negotiate with Glendale Memorial. We agreed to give them $3,000 up front for the hospital stay in order for us to schedule surgery. We could put that on our credit card. Once we agreed to that, we could schedule the surgery. Looking at the calendar there was one day that was totally empty. Guess what day that was? Friday the 13th. No one wanted to have surgery that day. So that's the day I chose. The plan was this: book the surgery for 5:00 a.m., undergo surgery, and then recover til 4:00 p.m. and make sure you're out of the hospital before 5:00 p.m. to incur less charges. That way, I wouldn't be charged for a full day. They gave a list of my medications to my husband who was told to get them from the  local drug store because they'd be much cheaper than getting them from the hospital. And then even though I'd have drainage tubes and needed care, I would be checked out of the hospital and allowed to go home. A nurse would teach me how to monitor my drainage and change my dressings. Seriously. When I write this now, it's like something from a Halloween thriller, right?

So that's exactly what happened. The morning of the surgery, we put the $3K down on the credit card. Prepped for surgery. And that's all I remember, until I woke up feeling like a I had been hit by a truck. I couldn't use my right arm because of the surgery and the lymph node dissection. I was bandaged with tubes coming out of my incisions. It's like a dream but very vivid in my mind's eye. My mom was sitting in a chair looking worried. I was in and out of consciousness. My husband came in with the bag holding the meds. There was a nurse that kept monitoring something. Then the doctor came in....it was sometime around 3:00 p.m. He told my mom something and she started crying, but happy crying. Later I found out that my lymph nodes tested negative. I don't think I said much. I was in a fog. Then before I knew it, the nurse came in. She helped me up. Sat me down, and started showing me how I would need to change my drains. They gave me the doctor's number to call and report the fluid drainage daily and gave me instructions on when to call if I felt that I had an infection. They gave me a sheet of exercises to do to regain mobility in my right arm. It was all this information being thrown at me, and then the next thing I remember is sitting in the car with my husband at the wheel, me in the front seat and mom in the back. I was wearing the hospital gown and a robe and being driven home.

My children were 6 and 12 years old. I remember their excitement as the car pulled up. And I remember their scared faces as they saw me coming up the stairs to the house. They had made little signs all over the house that said, Welcome Home Mommy. Crayon pictures of flowers and happy faces. I remember there was even a sign taped on the TV. I remember sitting down in the recliner and being so medicated that I couldn't carry on a conversation with my children. What I wanted to do more than anything was tell them I loved them and that everything was going to be okay. That we were going to make it through this, but I couldn't. I was so out of it.  I wanted to hug them but I was bandaged and my right arm didn't work.  Over the next few days things got better. The fog lifted. I changed my drains. The American Cancer Society sent women over to the house to help me with arm exercises to regain my movement. And then a few weeks later, once the incisions started healing, it was time to schedule radiation therapy.

We were living in La Crescenta, and because the radiation therapy was going to be administered under Dr. T - whose office was out of St. Mary's hospital in Long Beach, that's where I had to go for daily treatment, 5 days a week for the next six weeks. That's about an hour's drive one way.  The bill for radiation therapy came out to a little over $20,000 (remember, this was 20 years ago - imagine what it is today!) I went through therapy, and as tiring as it was, everything went smoothly. I had left teaching when I got diagnosed and had taken my daughter Ani out of Armenian School as the commute would have been too much for me at that time. The next year I went back to my teaching job. The administration was very happy to announce that this year they were going to offer us teachers health insurance. YAY! I remember coming home with the packet they had given us for review. The Kaiser representative came to talk to us the following day. They would cover us for everything - except pre-existing conditions. Was cancer a pre-existing condition? You betcha. Sorry. No cancer coverage for you. I had to wait 5 years before I got full coverage. Seriously.

 But it all had a happy ending. Eventually I did get coverage...and then eventually, I changed jobs and got a full benefits package at my new job. And then flash forward 18 years to 2011, and I got diagnosed first with colon cancer and then with breast cancer. Except this time, I HAD medical insurance. When I look at it now, the peace of mind was amazing. Having healthcare insurance is a blessing. When you are faced with a life-threatening illness, whether you have a family to raise or not, the stress and strain of worrying about how you're going to handle it financially, can hinder your wellness. Financially, it was tough enough to deal with college tuition - I was so relieved to know that my insurance was going to be there for my surgery. And what a difference it was. Surgery was scheduled effortlessly. I didn't have to put money down up front. I was treated just like everyone else....everyone else with insurance, that is. And because of this luxury, I could focus on wellness. I could focus on being healthy enough to attend my daughter's nursing school graduation. I could focus on healing from the inside out....and from the outside in.

 I understand that it all costs money. I understand that our country is concerned about budgets. But what I don't understand is that we seem to have billions of dollars for war and weapons. But we don't ever seem to have the funds for education and healthcare. We're offered "life, liberty, and the pursuit of happiness," but how can we live life fully when we are faced with medical needs and are so wrought with guilt over spending the family's last dollar on our survival? The toll weighs heavy on our shoulders.  We're all struggling as it is.  The Affordable Care Act would keep insurance company's from denying coverage for pre-existing conditions. It would allow those that have no coverage, affordable health care. I know it will have its problems. I know there will be opposition. I know it will not be the best for everyone, but it will certainly bring us one step closer to becoming a more compassionate and caring nation - one that's concerned about the health and well-being of ALL its citizens, not just the ones that can afford it.

I think I went on too long, but so much of those emotions came flooding back this week. It made me realize how much I appreciate  the healthcare coverage that I havenow  through my current job. But it also made me even more passionate about healthcare reform for all.

What are your thoughts? I would love to hear from you as always. You can leave me a comment here...or drop me a line at anushnoor@gmail.com

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