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.

Althought I knew Dr. Opth went to a different office on Fridays, I spoke with his admin and explained what happened. I just told her that he could call me if he had any questions. I mean, let’s get real … it’s not like I can just stop by his office and get another stitch or butterfly clamp put on it. I had no expectations but just wanted to let him know.

My eye is hurting more, almost like right after surgery. Plus the underside of my eyelid is more irritated. I decided to use my medicated drops throughout the day instead of the Refresh drop. It seemed to help somewhat.

Speaking of pain, I had my mammogram today. Actually, it didn’t really hurt (unlike the last time I had one!). The woman doing it took a couple of extra scans to try to get my lymph nodes included once she found out I had been diagnosed with melanoma.

Yesterday I attended a Chamber of Commerce Business Exchange because I know several people who were exhibiting in it. We went out for a drink after it was over. Although we sat outside, within a couple of hours most of the tables were full of smokers. I’m usually quite sensitive to smoke anyhow, but my eyes were really burning so I left.

Today my eyes were still burning but, since it was both eyes, I figured it was just the residual sensitivity to the smoke last night.

Around 5:30pm I did my usual peek at my eye’s condition. Yes, the eyelid is still somewhat swollen so I have to lift the eyelid up to see the surgical site. Well, tonight I got a nasty surprise. It was easy to see that one of my stitches had broken loose and the pulled together eyeball had opened up. Now this only took me a couple of seconds to figure this out … and then I got really dizzy. It seems that an open eyeball wound doesn’t like fresh air! Fortunately I could feel a faint coming on and was able to lay down before my dizziness got any worse.

Of course, I could resist another look prior to going to bed that night. Mistake! Got dizzy all over again.

By now I’m used to pulling out my credit card to pay my $35 co-pay as soon as I arrive at Dr. Opth’s office. Dr. Opth’s admin tells me I have a balance but I told her I want to pay until I receive the Explanation of Benefits (EoB) from my insurance company.

After examing my eye with the machines, Dr. Opth informed me that the eye is drying out. He gave me a couple of choices of OTC (over-the-counter) eye drops to get. They were a thicker formula than the standard tears-like drops. He wants me to add a drop every hour, every day to prevent any further drying. Okay, one more timer for my countertop! I already have a timer for the medicated drops.

I stopped on my way home at the drug store but only found one of the two recommended drops, Refresh Gel.

I made it over to the clinic to get my blood work done by 10:00. Again, more forms to complete. They actually give you a buzzer thing to hold onto to know when it’s your turn. Felt like I was waiting to get called into a restaurant!

The blood guy wanted to put me into a chair to draw my blood. That might have worked but I have a long history of fainting when it comes to being poked with needles. (I used to have very low blood pressure, so fainting was a part of my life for years.) The last time I mentioned this to a person wanting my blood, they felt they were good enough at their job that I wouldn’t faint. I bet she was regretting that decision when she was trying to keep me from completing sliding out of the chair!

Anyhow, this guy actually listened and let me lay down instead. He only took 2 vials, so I might not have fainted … but why take the chance!

I was out fairly quickly but he wrapped the bandage around my elbow so tight that it felt like a tourniquet. I cut it off as soon as I got to my car.

Have I mentioned that my eye is STILL really swollen?

Don’t you just love physicals?

So first I had to complete this 4-page questionnaire. However, I got called into the exam room before I was even half done. Had the joy of disrobing and putting on one of those lovely gowns.

Dr. Opth had given me a form to give to Dr. PCP that described my diagnosis and what he’d like to have tested. Dr. PCP gave me the exam (I’ll leave the details up to your imagination!) and gave me some paperwork for further appointments and testing.

Once I was dressed, I went over to the scheduling area. One of the forms had a bunch of stuff checked off and that was the form I was to take with me to get blood work done. That doesn’t require an appointment but I can’t eat for 12 hours prior to the testing. Today’s Friday so I’m going to try to do that Monday morning.

The other form was for the scheduler to set me up for a bone density test, mammogram, colonoscopy, and a consultation with an oncologist. We scheduled the mammogram for next Friday. She gave me instructions on how to call and schedule the bone density test. She wanted to get authorization from my insurance company before scheduling the oncologist consultation but told me I could still call them to get on the schedule since it would take a couple of days to get the authorization.

She also gave me a sheet with two options for calling about the colonoscopy. First, I have to schedule a consultation. Then they schedule the actual test. Why do you have to have a consultation when you already know you need the test?? Hmm.

I called my primary care physician’s (Dr. PCP) office to schedule an appointment. Now I don’t know about you, but in the past I distinctly remember having to wait a couple of months for an appointment. So imagine my surprise when, during a 4pm call, I’m told Dr. PCP can see me at 9:30 tomorrow morning! I had a conference call that conflicted with that time but I did schedule a 1:00pm appointment.