Wednesday, July 25, 2012

I Guess I am the Boss of Me

In between my thyroid cancer diagnosis and subsequent surgery, I began to work on getting a new oncologist for my WM. I mentioned in this post that in May 2010 I met a doctor who is a world class expert on my disease. I'm covered by my husband's insurance and the type we had chosen did not consider this doctor's clinic to be "in network." In November 2010 we looked into the other options and found that there was an option at his work that did, indeed, cover it as in network. Hurray! All we had to do was choose that option at open enrollment and move on.

I called in November 2010 to find out if I would be able to get an appt with this doctor  in 2011, and what the process would be. I spoke with a Patient Care Coordinator and told her I am on watch and wait, that I have an oncologist in Everett. I named the doctor we wished to see, but explained our current insurance did not cover him. Therefore, I was interested in coming in after our new insurance became effective in 2011.
I was told he has limited appts for new patients and that before I could make an appointment they needed my MR, so we should get started now. I was able to collect and mail the records and received a vmail from the care coordinator wanting to schedule an appt. When I called back, I left a vmail, then sent her an email. I explained that I was having my thyroid removed on Dec 29 and I have multiple post-op appts in January plus radioactive iodine treatment. I said that I would be available after that, but I realized that I might have to wait to see this particular MD and that was okay.
She scheduled me for an appt on January 24 anyway. At the time she mentioned that before the appt she would order slides so they could confirm the diagnosis. At no time did she mention anything about a charge for this; I suppose it shows my ignorance but even if I had known there would be a fee, my entire interaction with the care coordinator was prefaced with and based on the fact that my insurance would not cover SCCA until 2011. I cannot fathom why they would provide services in 2010 for an appt at the end of January 2011 knowing that I do not have insurance coverage but will have it in 10 days.
I received the appointment packet and I read each attachment in detail and discovered that the reading of the slides could cost as much as $3000. I called first thing in the morning. I began the call asking if she remembered me, I was the patient whose insurance wouldn’t cover the charges till 2011. She did, and even remember my husband's employer.  So, I explained that I was concerned that language in the enrollment package regarding the charge for the slides.
Her immediate reply was, “we’d better make sure that those slides don’t get read till January.” I said absolutely not because, as you know, I do not have insurance coverage till 2011, and now I’m so concerned that I want to have everything pre-authorized. She put me on hold, came back and said that I should speak with her supervisor.
The supervisor said that the slides would not be ordered until the appt was confirmed. I reminded him that I have an appt scheduled and have received the packet. He looked me up and found the slides had been ordered. He said he would immediately halt any services-if not already performed-and call me back.
We spent the rest of the day in phone tag; I called him back around 11:30  and left a vmail. He called me around 1:30 and said he was still checking. Finally, he called around 4pm and said the slides had been read. He said that he had submitted a request to the “quality committee” and recommended that I not be held responsible for these charges. He said the committee doesn’t meet till middle of next month and that I would hear after that.
Long story short (well, not really), I was not charged for these services and I've been extremely happy with the clinic and the doctor ever since. However, it illustrates two important points: 
  • when you have a chronic illness, the administration of it is a part time job. 
  • you must be your own advocate and not trust the system to take care of you
Scripture referenceRomans 12:17-19

Thursday, July 19, 2012

Being the Frog

The next step in my thyroid journey was an ultrasound  to check for involvement of the lymph nodes. It did not show anything of concern so I escaped a biopsy there. Thank You, Lord! The same day we met the surgeon and Bruce and I both liked him. My surgery was scheduled for December 29. Merry Christmas to me.

Several weeks later I saw the surgeon again for a pre-op appointment. While I was in the office he did a nasolaryngoscopy to check out the terrain he would be working in during surgery. They use a flexible fiberoptic scope. First, he sprays a local anesthetic into the nose and down the throat. It has a bitter taste and makes you feel like your throat is swelling up. "Don't panic," read the instructions online. Defend me.

The doctor inserts the scope into your nose and down the throat. It sounds so simple, yes? I may have mentioned, I don't like medical procedures. I did okay for a while but when it started to feel like there was something groping around my tonsils, I indicated we were done. (I truly feel sorry for my doctors, as I am sure you certainly do.)

The surgeon was able to get all the information he was seeking. They had me sign all the paperwork for the surgery, including the one that spells out all the possible complications including multiple avenues to death. More requests for end of life directives. The procedure was listed as "bilateral neck dissection." The last time I was involved in a dissection I was the dissector and it did not end well for the frog. this time, I was going to be the dissectee. We had a discussion to define dissection.

Seriously, I was pretty confident in my surgeon. He did a fellowship in thyroidectomies and my endocrinologist has been referring to him exclusively for over five years. He did tell me I have a great larynx. No one's ever told me that before.

Sometime over the next few days received a letter from my gynecologist informing me that my PAP was abnormal and needed to have a biopsy in the next four weeks. Let's see, should I do that before or after my thyroidectomy?

Scripture reference: 2 Corinthians 4:16-18

Tuesday, July 10, 2012

Taking My Lumps

In October 2010 I randomly found I had a lump in my throat. My PCP said it that is was likely on the thyroid. Apparently, thyroid cysts are very common and don't necessarily require any treatment. In fact, my daughter had one and the only treatment was aspiration to reduce the size.  My PCP said it needed an ultrasound and referred me to an endocrinologist. The ultrasound was uncomfortable, just from the pressure on the throat. He reported that I had more than one cyst and that it could be cancer. He was comfortable waiting 6 months to see if it grew larger. The other option was a biopsy. 

Well, by this time, you know I am not a fan of medical procedures. I am, in fact, a big weenie. However, my husband faithfully keeps up with all the information that comes out regarding WM, from patient boards to medical abstracts. He persuasively argued that we should proceed with the biopsy.

True to form, I found that I do not like thyroid biopsies. I do not want to do this again. It is hard to explain; it did not hurt so much, it was just...disturbing. They use a local anesthetic. It is a fine needle biopsy. The large cyst was fluid filled as expected and immediately refilled after they drained it. The doctor predicted that it was almost surely benign. The one on the "isthmus" right over my trachea was solid and he really had to punch through. He is pushing the needle and we wait...then it POPS through. That was the disturbing part. 

They had to do 4-5 punches on both cysts. I think they were planning to do a third one (the one that is very small) but they decided to quit because I was in distress.  Bruce was in there and he said he couldn't tell, but the doc could see it. He said to me, "Can you handle one more?" I said, "Can you?" and he answered, "I don't think so."   I’m such a coward! It makes these things challenging. I’m glad Bruce couldn’t tell, although after the doctor and nurse left I burst into tears and Bruce said, “Why are you upset?” Um…..hard to explain.

The doctor said he'd call me with the results in a week or so, but not to worry. He called me two days later and said the biopsies showed that there was cancer in the thyroid. The good news is there is more than one kind of thyroid cancer and the kind I have is slow moving and not aggressive. He phrased it "the most well-behaved type of thyroid cancer." Well, if you can't have a well behaved patient, you might as well have a well behaved disease. 

Scripture referencePsalm 119:281 Peter 1:6-7