The Miracle of the Shoes

The old adage of waiting for the other shoe to drop was one used by a bunch of us in an email support group years ago where, because of difficulties outside of our control, we seemed to get hit with crisis’s all too often without any warning.

In the last year or so I’ve been the beneficiary of quite a number of shoes. You’d think they would have to run out, or at least get to the slipper section over time, however with every shoe that drops, a new pair miraculously appears precariously positioned over my head, just high enough to give a good wallop when it too falls, and we are talking about good solid footwear.

Wednesday, August 17, 2011

Installment 2 – Confessions of a Squeaky Wheel

In November of last year, Doug’s employer offered a choice of insurance plans. I did an extensive review of our medical expensive, going on the assumption that I would continue receiving my cancer treatments every month and getting the bone and CT scans every four months. I also took into account my impeding eye surgery and our prescription costs. I confirmed that UNC HealthCare and our primary doctor were in-network providers. Doug’s cardiologist visits were down to about every six months, so his doctor being out of network didn’t seem to be a huge problem. After doing all the calculations, we choose the Aetna plan that would save us several thousands of dollars by my calculations. After our deductible and a certain amount of out of pocket costs, paid partly by a contribution made by Doug’s company, insurance will pay 90% of in network costs, 70% of out of network. After paying  $2250 out of pocket in network and $4500 out of network, then they cover 100% (but in the out of network it would only be what they consider appropriate, we would still be responsible for any charges above that).  We hit our deductible at my January cancer treatment and would probably meet our out-of- pocket maximum with the eye surgery. Sweet!

On February 1st I called to confirm my surgery date as directed. The nurse unfortunately has to inform me that starting the 5th, UNC would no longer be an in-network provider for Aetna. She explained that contract negotiations between Aetna and UNC just broke down and it didn’t look like they were going to get back to the bargaining table. I was stunned. Very apologetically she said that I’d be responsible for paying the entire costs upfront and would have to wait for Aetna to reimburse me at 70% of what they feel is acceptable compensation. She asked if I wanted to postpone the surgery until I can work things out or find another hospital and eye surgeon. I held it together long enough to say, no, I didn’t want to postpone. After I hung up I just about flooded my basement again with tears of frustration.

Then, I got angry. I called Aetna and was told that yes, the contract with UNC has been canceled due to UNC demanding higher compensation for their services. UNC is a state hospital, so I decided to reach out to my elected representatives.  I called up Kay Hagan’s senate office in Washington and asked to speak to her aid involved in the healthcare debate. I was transferred to a wonderful young man, Jason Lindsay. He was very sympathetic and told me he would look into the situation and get back to me. Early the next morning he called and asked if he could gave my phone number to someone who would know more about the situation than he did. A short time later, Miles Lacky, the director of UNC’s Office of Federal Affairs called me. He also was quite sympathetic and promised to look into it and get back to me.

I expected I’d hear in a few days, but instead a few hours later he called and explained it like this: UNC asked Aetna to raise its reimbursement rate to be in line with the rate reimbursed by other insurance companies AND equal to the rate Aetna reimburses other, similar healthcare systems in our area. Aetna refused. There was some hope that they would come to an agreement before the Feb. 5th deadline and he gave me the name and number of the vice president of Public Affairs & Marketing for the UNC HealthCare system who was involved in the negotiations. He asked me to keep him up to date with my situation and offered any help he could provide. He also told me look up on-line for an Aetna request form that would allow UNC to treat me as in-network for a period of time until things get settled.I found the forms, filled them out and sent them to the cancer clinic and the eye clinic for them to fill out their parts and then fax them to Aetna. While I waited, I also wrote an open letter to the chairman of Aetna which I sent to several local and big city news papers. I mean, who wouldn’t want to publish a scathing letter to the head of an insurance company? Of course, it rejected by all of the papers, but a few were very sympathetic and a reporter for a Raleigh Newspaper did call up to interview me. Here is a link to that article: Aetna's fee fight adds to cancer patient's stress   (Unfortunately she interviewed me a day after my eye surgery and I was still a bit dopey on pain meds.)
 
As my cancer treatment and surgery date got closer, and I had not heard anything about my request, I called Aetna. When you call the Aetna member services number, you first get a computer voice that asks you to “describe why you are calling today.” If you ask to speak to a representative she cheerfully agrees to connect you but first she needs to “ask you a few questions to better direct your call.” She doesn’t give up. Yelling and cursing at her does nothing to get you a real person, I know that from experience. So I begrudgingly answer her questions. When I finally get to a person, they will ask me the exact same questions again. So I explained to the live person that I was calling to see if I had been approved for a Transition of Coverage for my upcoming treatment and surgery. After asking some more questions, he looked up on the computer and found no record of my applications. I asked to be transferred to the department in charged with receiving those applications and I was told it was a fax machine and no one would have that information until it was inputted into the system. Wasn’t there anyone I could speak to who could look through the incoming fax papers and tell me if mine was there? “No.” Isn’t there anyone in charge of logging in those faxes? “No.” Can I speak to someone in the department who makes the decisions about approving the applications for Transition of Coverage? “They wouldn’t know anything until it is in the system, and yours isn’t in the system.”

By the time I got off the phone, I had no more information and no one to scream at. I called up my doctor’s assistant to see if she had actually faxed it in. I’m not a religious person, and I may not believe in miracles and supernatural beings, but I do believe in angles on earth, and Jeanne G., my doctor’s assistant, is one of them. When she told me that she had faxed it the same day she received it and even had a confirmation that the fax had gone through, my resolve crumbled. Through my tears I told her all that was going on and that my treatment and scans were that week and I didn’t know if they would be covered and my surgery was in a couple of weeks and I’d have to pay upfront and that I was so stressed out about the surgery and my upcoming scans and no one at the insurance company cares and I hated that stupid computer person who won’t let me talk to a real person and that the real people there don’t know anything and it all really sucks… Jeanne calmly told me that after we hang up I should go get myself a cup of tea, put my feet up and just relax. She said not to even think about this, she will call the insurance company and get things all straightened out!

She called before she left work that day to say she had spoken to a nurse at Aetna who was one of the people who made the decisions about the transition of coverage and that she would call me as soon as she heard back from her. The next morning she called to say that a TOC was approved for TOC for Dr. Carey and the Cancer Hospital until May. I made a note to myself to take her a present when I go in for my appointments. After I hung up I realized that I still didn’t know about my eye surgery coverage. Enter now my second angle, Juan.

Juan is the financial counselor at the eye clinic. I called him and explained the situation, on the most part without tears. I gave him Jeanne’s phone number so he can get the name of the person she had spoken. It took a bit more time, and faxing some more papers to him, but I also got approved for the eye clinic and the surgery. For the first time in weeks I was feeling like things were looking up.

Then I got my first EOBs (Explanation of Benefits) from Aetna. They were all wrong, they were covering it at the out of network rate, not the in network my TOC allowed. Although a few phone called go that straightened out, for the next few months, every EOB came in wrong and I’d have to call up (and yes, go thought the whole rigmarole with Ms. Computer and again with a person) and get the bills resubmitted. With all the appointments I was having, it was an almost daily routine.

At the follow up eye appointment where I needed a consultation with one of the other doctor’s there, I had to get it approved by the insurance before I could see him. Mind you, back in the fall, when we had other insurance, the eye doctor had simply pulled his college into the room to consult. So another TOC request was sent in and an appointment was made. I didn’t even bother to wait for the acceptance; I wanted to see this doctor as soon as possible. However, when they wanted to do the tear duct procedure, I had to go into the financial counselor’s office to see if the insurance would cover it. Juan came through for me once again, not only getting it approved, but also getting them (he said it was their idea) to extend my coverage until August. It would have been a great relief, but I went straight from his office into the procedure room to have the punctoplasty on my blocked tear duct while worrying about Doug and his heart issues.

My next installment will deal with the good, the bad and the in-between of the Holsteins, but I do have to add some good news. As my August treatments were coming up, I decided to ask for one more extension of my TOC. I figured all they could say was no, but I decided to ask them to extend the coverage until the end of the year. Here is part of what I attached to my request:
To keep my cancer under control, I need to have treatments monthly and periodic scans to check for continued spread. Without the TOC, I will be responsible for over $18,000 of not allowed costs and out of network co-pay for just these treatments and one set of scans between August 14th and December 31st. The difference for Aetna in my coverage would less than half of that.

I appreciate you taking this under consideration.
My angle Jeanne G. not only faxed it in for me, but called the contact she had made when she went to bat for me in February. A few days later I received a call from a nurse who was reviewing my request. She wanted to know my diagnosis and treatments. “..and how long will you be getting these monthly treatments?” For the rest of my life…. “Oh, well, um….you’ll hear from us no later than tomorrow.” The next morning she called to say I was approved! Someone must have flagged my account, because ever since May, whenever I call to have an EOB corrected (yes, they STILL process them incorrectly) everyone is really very friendly, sympathetic and helpful.

Well, except for Ms. Computer. However I don't yell at her any more, I'm sure she gets plenty of abuse from other unhappy Aetna customers!


Friday, July 22, 2011

Distractions -Installment 1

I last reported, many months ago, that a small tumor was found on my eye adjacent to the cornea. I met with an eye surgeon at UNC and he wanted to try a chemotherapy drop in my eye to shrink or completely dissolve the tumor. The course was three weeks of using the eye drops four times a day, then three weeks off and then three weeks on again.  Near the end of the second three week course, I began having horrendous pain in and around my eye, the whole right side of my face ached and even the dimmest of lights felt as if I were looking directly into the sun. My local eye doctor said that my iris and ciliary muscles were going into spasms. He dilated my eye hoping that would relieve the spasms for a few days and prescribed an antibiotic gel. Unfortunately, something about the gel made it to feel like I had squeezed slivers of glass right into my eye. At that point I decided that I could not go through a third course of the chemo treatment. Although the eye surgeon told me that the surgery would be even more painful, at least that would be the end of it, rather than trying another course of drops and then maybe having to have the surgery. This was around the beginning of November.

The anticipation of someone cutting into my eye was somewhat balanced by the expectation that all of the uncertainty and the treatments would be over with; however, my surgery wasn’t scheduled until January 10, 2011. It was a very long and anxious wait. Before going to bed on the 9th, I did all the prep I was supposed to do, which amazingly was to use an anti-biotic wash from my chin down to my toes, but not near the eye. As prescribed, I didn’t eat or drink anything after midnight except for my morning dose of Gabapentin  (for my peripheral neuropathy) and a Xanex (so possibly I wouldn’t be a complete nervous wreck on the three hour drive to Chapel Hill). As we left our house at around four in the morning, a few snow flurries began to float down. Here in eastern North Carolina, it almost NEVER snows. Chapel Hill was supposed to have snow, but it was predicted to start well after we were to be at the hospital. I leaned my seat back, closed my eyes and let the Xanex take me to a calm and sleepy place. About forty- five minutes to an hour into the trip, Doug pulled the car over and told me we were turning around.  I sat up and all I could see was white. I blinked my eyes thinking that they were just trying to mix me up, but the scene didn’t change -there was nearly four inches of snow on the road and we were in a white out. All I wanted to do was get to the hospital and get this business over with. We were yards away from getting on I-40 and I begged Doug to keep going, the highway had to be clear. We watched several cars head down the entrance ramp onto nothing but white. Knowing that most of eastern North Carolina had few if any snow plows and that drivers had little to no experience on snow covered roads, he turned the car around. I was sobbing with disappointment and frustration, soaking the blanket I had pulled over my face so the bright white of the snow wouldn’t hurt my eye. I called and canceled my surgery and we made the forty-five minute drive home in two and a half hours, in a slippery, blinding snow storm. We ended up with over five inches of snow on the ground and even the Marine Base closed for the day.

My surgery was rescheduled for February 10, but that again pushed back to February 28 as the doctor was not going to be available.  I was devastated, depressed and downright angry.  Life was proving itself to be quite unfair.

Around the same time as my eye issues began, my sister was diagnosed with breast cancer. We didn’t have any of the genetic markers for familial breast cancer but it was still suspicious that our aunt and her oldest daughter also had developed breast cancer. We lived a block away from them growing up, so maybe there were environmental factors (did Aunt Adele serve the same canned peaches for desert as out mom did? Hum, I need to ask….) or maybe it was just one big unfortunate coincidence.

So all Fall my sister and I would try to validate each other’s fears, frustrations and anger through text messages and emails.  I tried to give her hope and a positive take on all she was going through. We’d have our own private pity parties when either one of us needed them, but I continued to encourage her to fight on and look forward to the end of the treatments and the beginning of again living cancer free. As I awaited my delayed surgery, I couldn’t seem to muster any of that optimism for myself.

Then something happened that changed my entire focus. I will post the details at a later date, but my focus was realigned to fighting my insurance company which since early February has been an almost daily battle.

I did finally have the surgery, which turned out to be a breeze. I told the doctor that I don’t do good on Percocet, it makes me feel like bugs are crawling all over me and if I take enough, I even see them… so he prescribed Vicodin. Between the Vicodin and Kentucky Fried Chicken Doug and Sarah went out and got me for dinner, I was pretty happy! The stitches were a little uncomfortable, but nothing like the chemo eye drops, so all in all, the surgery was the way to go.

When I returned for my one week check up with the resident (my doctor was away), I got a somewhat confusing pathology report:  melanocytic nevus and tissue changes consistent with mitomycin C (the chemo eye drops) treatment. Basically, a mole. A mole? On my eye ball? Are they kidding me, I went through all that pain and worry for a mole? Was there ever any cancer? Well, it seems that they don’t really know. There could possibly have been some malignant cells that the chemo drops killed, but they don’t really know.

At my one month follow up, the surgeon was there, but when I asked him about the pathology report he said he really didn’t know what it meant and I would have to see the consulting doctor I had also seen back in the Fall.  However, that might be a problem because of my insurance (my “insurance” post will explain). When I also asked about the fact that my tear duct was now clogged due to scaring from the chemo drops, he said that this other doctor was also the one to consult about that also. Insurance be damned, I made an appointment with that doctor.

At that visit he said it was unlikely that it was cancer and should not be a problem in the future, but his resident said that it didn’t prove that I didn’t have any malignant cells which could be or have become a melanoma. They will follow up with me in around six months. He said he could fix the problem with my tear duct, but we had to go to call the insurance company to see if that was covered.

To add to the ‘funness’ of the situation, I had driven up to Chapel Hill with Sarah so I could spend the weekend helping her set up her apartment. Doug was going to drive up for my appointment and drive me home. He calls me around the time he would be leaving Jacksonville to tell me that he wasn’t feeling so good. In fact, the EMS had just left. About a week or two prior his atrial fibulation had started again he had called 911 when he was having trouble breathing. He didn’t think he needed to go to the hospital since they assured him he wasn’t having a heart attack, but he didn’t think he should drive up to Chapel Hill. Duh huh! He assured me he was OK, but at that point, all I wanted to do was get back to Jacksonville. I didn’t have a car and Sarah’s car was in the shop.  I asked Sarah to find me a rental car, but instead she called my friend Marion.

They insisted I go to my eye appointment which, not only did Marion drive us to, but afterwards she drove me all the way home to Jacksonville. About five minutes into the drive home I realized that I was in no shape to have driven myself! Also at the eye appointment the resident preformed a minor surgical procedure to enlarge the tear duct that had scarred over from the mitomycin C. On a positive note, it was one way to get Marion to come down to Jacksonville and visit!

Oh, and when we went back to Sarah’s apartment to get my stuff, Sarah gets a letter telling her that her COBRA health insurance had been canceled. More on insurance companies in my next installment…
   
  

Sunday, July 3, 2011

One more letter down the alphabet and I'd be a dancer

Instead of my life being choreographed to the rhythm of music and the artistic interpretation of a dancer, it’s choreographed to the appointments and treatments for my cancer. Monthly trips that take up one or two of my precious days, time that I’d much rather be spending elsewhere and doing almost anything else. However, I can’t do much about that, but I can do more about how neglectful I’ve been of my blog now that some of the distractions I’ve been tending to are easing up.
While I apologize for my silence these past eight months, I’ve got a long update in the works and will post that soon.

However, this Wednesday, the 6th of July, we are heading back up to Chapel Hill for two days of medical proceedings (makes it sound less, well, medical) . I’ll spend most of that first day having a bone scan and CT. Lots of sitting, waiting, laying around and drinking yucky stuff. Then dinner with our daughter Sarah, and thanks to Priceline, a night at a luxury hotel for less than we’d have paid at the nearby Day’s Inn! On Thursday I see my oncologist and then have my infusion and shot. 

After that comes a treat. We are heading up to Alexandria, VA to spend a few days with our son Henry. It’s been a couple of years actually since we’ve been up to visit him, and the first time since August of last year since I’ve been anywhere but here and Chapel Hill. It should be a nice get away and I’m sure lots of good food!

                                                                                  
   Happy 4th of July everyone   
                                                                                  

and a happy 119th birthday to my Papa Alex!