Good news, bad news. I just found out that my friend who gave me a ride after my last surgery won’t be available when I have my next surgery. It’s great that she’s able to extend her vacation, which is why she won’t be available. It just means I’ll need a back-up plan but I still have a couple of weeks for that.

This morning started out at the medical group so I could get my PET CT and CaT scans done. The CaT scan looks at, basically, the torso. (The MRI will check out my head.) The PET CT scan works a little differently.

The PET CT scan traces the glucose in my system because the glucose sticks to areas of cellular activity. Although they expect to find it in places like my liver, if it shows up in unexpected places that could mean a cancer site.

When I first arrived they put me in a small “relaxation” room and stuck an IV in my arm so they could use it later. The first thing they put in the IV was a radioactive isotope. I was told they would leave me alone for about 45 minutes because that was the amount of time it took for it to dissipate sufficiently for me to be safe to be around. No, I didn’t glow.

I was given a liter of “contrast,” which is basically something added to water. I was told to drink it very slowly over the next 45 minutes but to leave a half glass. Although I brought a book to read during my relaxation, they really didn’t want me reading. Apparently, any activity shows up in your muscles when they do the scan. So I spaced out and sipped my “contrast.”

They eventually showed up to take me in to have the scans. Since I’ve already been diagnosed with melanoma they were doing a “top of head to toes” scan rather than the normal torso scan. I don’t know which part was which scan. The machine has a sliding table you lay on and it moves you in and out of a big tube. First they gave me the glucose through the IV while I was on the moving table. A kind of a torso scan only lasted a few minutes. Then they did a lower body scan that took about 12 minutes. At that point I had to flip around so they could do the upper body for about 15 minutes. Then I was done. In and out in just over a total of 2 hours.

Down to only one medicated eye drop per day now! Seems a little weird that just one drop does any good and that I’ve had to be weaned off of it. Of course, I’m still on the hourly timer to use the other drops to keep my eye from drying out.

Down to the final day to settle the insurance confusion or to change my CAT annd PET CT scans that are scheduled for tomorrow morning. After spending 45 minutes on the phone with the insurance company, they finally agreed the medical group is a preferred provider. Yea, just saved $3,000!

Got a call this morning from Dr. Opth’s office. They had a surgical cancellation and offered me the opportunity to have my surgery on 11/17 instead of the following week. I had to decline since my whole work schedule is now based on having surgery the week of Thanksgiving. Not to mention that my friend who plans to pick me up after the surgery is on vacation the week of 11/17.

Got a call this morning from the medical group person who’s been helping me try to untangle this insurance mess. She had faxed over the copies of the letters I received to the insurance company’s Utilization Management person but hadn’t heard anything from them. She suggests I contact the insurance company’s customer service again and talk to a supervisor. She said I should mention that the utilization management department believes the medical group IS a preferred provider for my plan.

As it happens, I received a “stay of confusion” because the medical group called me to reschedule the MRI (that was tonight). It appears the original scheduler missed the fact that they are scanning more than one area or something and the missed part requires me to be there during the day instead of the evening. Since I was unable to immediately go over there when they called, we’ve rescheduled for next Tuesday.

I called the insurance company this morning to better understand the letters I received over the weekend. According to customer service, the medical group signed up as a HMO preferred provider but not as a PPO preferred provider. Being astounded didn’t change her mind.

She told me I could always check the insurance website to find a preferred provider. I told her the medical group was on their list and it makes me specify which plan I have when asking for providers. She didn’t have a good response for that but she gave me two other imaging places that were on the preferred provider list.

Then I called the medical group and told them I would need to change where I have the scans done. She said they absolutely WERE a preferred provider for any plan but would check on this. She called me a little while later and asked me to fax the letters to her because she needed to show them to someone.

The medical group called someone in the Utilization Management Department (UMD) at the insurance company and they went back and forth most of the day over this. The UMD person felt that the letters were sent in error and wanted a set faxed to her, too, so she could check them out. By the end of the day, the medical group person helping me hadn’t received anything definitive.

Since my MRI is scheduled for tomorrow, I’m going to have to decide what to do at least by noon. One problem is that I have appointments in the morning and can’t spend the time chasing the insurance company for a decision.

As it happens, I got a call from Dr. Opth’s admin. She said they had a cancellation and I could have surgery on 11/17 instead. However, since my friend who’s giving me a ride is on vacation AND I have my work planned around Thanksgiving week, I passed and kept my original date.

Don’t you just hate it when you get news on a weekend and can’t do a thing about it until Monday? Big bonanza in the mail today. I received a stack of EoB’s plus five letters regarding the scans that Dr. Onc had asked for.

There was one letter for the MRI stating it was approved as medically necessary but that I was using a non-preferred provider so there could be additional financial responsibility. The other four letters were in a similar vein for the CT and PET CT scans.

I was confused about the non-preferred provider part because this medical group is well-known for accepting insurances. At first I was tempted to ignore it because I already know I’m easily going to hit my deductible this year, so what more financial responsiblity could there be?

Okay, here’s today’s lesson. I went on the website to try to figure this out and ultimately found the place where they showed my dedutible, plus my co-pay maximum for preferred and non-preferred providers. The co-pay maximum is $7,000 for preferred and $10,000 for non-preferred. Ouch! Does this mean my total out-of-pocket this year is going to be $12,000-$15,000 instead of the “mere” $5,000 I was planning? It’s on my to-do list for Monday to call and figure this out.

Oh look, my EoB’s show that I’d already reached my $5,000 deductible before the first surgery was even over. Yikes!

This morning I had my radiation consultation (Dr. Rad). I completed the usual paperwork and first met with Dr. Rad’s assistant. She asked questions and then Dr. Rad came in.

Dr. Rad was unfamiliar with Dr. Opth but seemed to feel better when I told him that Dr. Opth has had at least a couple of melanoma cases before. When it came down to it, Dr. Rad said that they have no experience with this type of melanoma and doesn’t know how he could help. Since Dr. Opth isn’t thinking radiation therapy, it didn’t really matter.

Dr. Rad’s assistant told me I should be putting together my own medical chart, including all test and scan results. She also said I should at least consider going to Wills Eye at some point for a consultation.

I still haven’t received anything from my insurance company, so I called to ask why. They didn’t know why I hadn’t but were willing to send new ones out. I needed to give them appointment dates so they could track them. However, after five I told here there were just too many to use this method. She told me I could access them online, so I’ll look there.

Dr. Opth’s office called and I’m scheduled for surgery on the Tuesday of Thanksgiving week (11/25/08). It’s not until 1:00pm though. The nurses told me at the hospital that it’s best to get the first surgical spot of the day because everyone’s fresher. However, Dr. Opth’s admin said it’s the first surgery he has scheduled that day so I won’t be #5 on the list at least. So my only issue will be the fact that I won’t be able to eat that day until about 3:00pm! I can already hear my stomach growling!

Okay, now I realize only women who are used to wearing eye makeup will appreciate this but I finally got to wear eye make-up today! Since I don’t have to use the medicated gel at night, my eyelid and eyelashes are no longer all greasy and the makeup will actually stay on. I’m so excited!! Yes, my eyelid is still swollen but most people no longer notice it as much.

Had my bone density test today. My first. They wanted me to avoid wearing metal in/on my clothing so it wouldn’t interfere with the scan, but that was the only prerequisite.

Filled out what it becoming the usual amount of paperwork and waited to be called in. This was the fastest and simplest test thus far. I had to lay down on a table that actually made me think of a treadmill because I seemed to be on a rolling belt. The technician lined me up with a line on the belt and put a thing between my feet to keep my legs at a specific angle. Then the scanner did this stop-start action over me. It was really fast though. I was done in about 5-10 minutes.

I also had my usual meeting with Dr. Opth today. This was the first time he’s had the chance to see my eye since the popped stitch. By now, fortunately, it wasn’t hurting as much but was still much more irritated than it had been prior to popping the stitch.

He decided to remove the popped stitch and the un-popped one. He put some deadening drops in my eye. Then he starting out using tweezers to pull the stitches out. I could feel a tugging but he couldn’t get the stitches out. Then he tried a little blade to no avail. Finally, he used a pair of scissors that quickly did the job.

I told him about the oncology consultation and the appointments I had scheduled. He was glad those were on the books since he was more anxious for those than the things associated with my physical. He told me he had finally met with the pathologist to talk over the biopsy results.

Another pop to that balloon of optimism. Turns out that the other sample he took from the “good” part of my eye during surgery also show pre-cancerous cells. He’s emailed his contact at Wills Eye and they strongly recommend a more aggressive move now. So we’re scheduling another surgery where he will take a larger area from where the bump was, plus he’ll do a more aggressive cryotherapy (freezing) over the whole white of my eye. He explained that my recovery will be slower because of the “extra” effort … and, of course, more pain. He’s calling this a “re-do” surgery.

Best case scenario is that a biopsy of the part cut out will show clear margins. However, the reality is that we won’t have a clear cut answer after the surgery. Since he didn’t freeze the other half of my eye, it’s not like he can take another samples and expect different results from that side. Once this surgery is over we’re kind of at a “wait and see” point.

He wants me to reduce my medicated drops to only twice a day for a week, then only once a day. I also can discontinue to medicated gel at night. However, I must continue the hourly Refresh Gel drops.

He was willing to wait for this second surgery for 2-3 months but I want to get it done sooner to stay within the calendar year’s deductible. His November schedule is already full but he told his admin that, if she can get hospital time, he’s willing to do it whenever I want. We’re aiming for the week of Thanksgiving but she’ll have to let me know if she can get it scheduled then. I hope so because that kind of gives me a week to recover when my clients won’t have much activity due to the holiday.

Dr. Opth’s admin informed me that I owe over $1,100 so far and their billing office wants her to collect. I mentioned that I still hadn’t received the Explanation of Benefits (EoB) from my insurance company and said she told them that. The billing office sent copies of the EoBs they had received. We couldn’t figure out why they had gotten them before I did. However, I did pay it.

Today I had my consultation with the oncologist … we’ll call him Dr. Onc. Again with the paperwork. I’m finding that absolutely everyone I talk with that’s connected with the medical group asks me my name and birthdate and then compares my info with what’s on the paperwork they’re holding.

I first met with Dr. Onc’s assistant. We went through the whole history of how I first figured out I had a problem up to what was currently happening. She made the comment that she’d been reading up since getting the pathology report and that this type of melanoma has a tendency to reoccur more often than others. Hmm, I really could have done quite nicely without that little piece of information. I know there’s this whole thing about keeping the patient informed but it makes it harder to maintain my balloon of optimism!

She left to update Dr. Onc. and he eventually came into the room. I gave him the a copy of the instructions Dr. Opth had given me (I had mistakenly given the original to Dr. PCP). We talked a bit about what’s been going on. He looked at my eye and told me that he wants to have me checked out to ensure there isn’t any cancer elsewhere in my body. He said retina melanoma (which he assured me I did NOT have) often moves to the liver fairly quickly.

He’s ordering an MRI that checks out my head. The CT (aka CaT) scan looks at the torso. The PET CT is a little different because they radiate my body and then inject glucose. The glucose goes to the places in my body where’s there’s activity. The scan shows where the glucose has gone. The idea is that it shouldn’t be going anywhere they don’t expect to see it. If it’s elsewhere, it’s possible that it’s cancer.

He completed a form and they sent me out to talk with a scheduler. As I was waiting for the scheduler, I noticed he had marked each scan “ASAP.” Wow, another confidence builder! ha!

I was able to scan my MRI for the following Tuesday, 11/4, at 7pm. We were able to combine the CT and PET CT scans for Thursday, 11/6, morning. She then gave me a multi-page itinerary and instructions. Nothing special for the MRI. I was supposed to stay on a high-protein diet with 12 hours of the CT/PET CT scans, with no food 6 hours prior to the scans.

A couple of items on the list made me curious. It said I could drink diet soda, but to watch out for caffeinated and de-caffeinated ones. Is there a third choice I haven’t heard about? I was also to avoid mints. At first I couldn’t figure that one out but eventually I realized they were probably talking about breath mints that have sugar in them, which would make them a no-no.