I love having a plan.

Calling all Type-A cancer survivors out there: Hi! I'm one of you. I wondered when I got diagnosed if my personality type would change drastically as I have always been a type-A likes to have things be perfect and organized type of gal. But to be honest, that part of me hasn't much changed, I do think I try and be less "perfect" about a lot of things these days and go a little easier on myself, but when it comes my health care I am definitely and gladly so still anal.

So, like I said began my mission to put together an aggressive team of people that could help me do everything I can to beat off this "beast" as they say in my list-serv group.

I took a few-pronged approach which I still consider to be the right path for me for now. There's both a more eastern/holistic approach and there's a kill the suckers with serious toxic western drugs approach -- both I consider valid and helpful in their own right.

Step 1: Find a Dr. who is aggressive and knowledgable about this disease and get him to take me on as his patient: check done. After my less than fulfilling experience here in Boston and my extensive and scary research I sought out a Dr. in Philly called Dr. Takami Sato. He is one of the leading (and few) metastatic uveal melanoma oncologists in the US. They're not exactly run of the mill types of folks. In any case I had read quite a few reports of trials/research he had done and was utterly impressed by the fervor that he took on in trying to find a cure for this disease once it had spread. I also got numerous references for him from my online list-serv group "Ocu-Mel". I immediately contacted his coordinator (during my rehab from eye surgery week) and requested an appt. She said he would be happy to see me and we set a date for March 3rd- exactly one week after my last radiation treatment. In the waiting time of going to see him I compiled a list of questions, and of possible adjuvant (read: proactive before the disease spreads) treatments to bring with me to this appt, wanting to be prepared.

My March 3rd appt could not even be compared to being in the same ball park as the one I'd had with Dr. G. Dr. Sato sat down with my mom and I for 3 HOURS UNINTERRUPTED and answered any and all questions we had. He discussed possible treatments, a few things to look into, my "real" prognosis, and developed a very aggressive scan schedule for me to enact when I arrived back home in Boston. He agreed to be my doc and told me he would back me in pursueing any of the options I chose (YAY!).

Side note: For those of you who are lucky enough to not really know what a "scan schedule" might entail it means getting regular MRI's/Ultrsounds/PET/CT scans all of which are diagnostic imaging and can be used to detect tumors. They are considered light years more accurate than waiting for your blood tests to come back abnormal (which is the protocol Dr. G. uses to determine whether or not you have had metastasis --boooo to him). You could potentially have a 10cm tumor in your liver and have normal blood tests. But you could not have a 10cm tumor in your liver and have it not show up on any imaging tests.

I left Philly feeling hopefully for the first time since being diagnosed, and also felt determined -- much different from the somewhat depression I'd slipped into over the previous weeks reading countless stories of people constantly dying from this disease -- or so it seemed. I came home and on the drive back with my mom wrote up a "Plan". The plan had a lot of detail, but I will spare you those.

Step 2: Start getting scanned regularly. Dr. Sato had suggested an ultrasound/MRI of my abdomen every 3 months for the first 2-3 years post my initial diagnosis. Additionally there would be semi-annual chest x-rays, and blood work. I was to get my 1st MRI ASAP and let him know the results.

That was when the waiting began. It really sucks waiting. That is a massive understatement, but unless you are in a situation where someone is about to tell you whether or not your battle for life will be exponentially harder or just that of the average cancer gal I'm not sure you would understand. There should be some way to put people into a temporary coma or something for the few days/week you have to wait for results to come back, that way you don't die of anxiety (or "scanxiety" as some say) before actually getting your answers.

So I went for my 1st MRI and ultrasound, somewhat chipperly as Dr. Sato had intuited that he was fairly sure everything would be negative, so I tried to remain positive. The scans were on Friday March 7th, and on Tuesday March 11th my PCP called and left me a message saying "I got your results, by and large everything looks fine." I thought PHEW! and went to the office to pick up a copy of the reports and the cd's for myself (a little trick I've been taught and find necessary to keep my sanity when dealing with 20 different dr. offices..) . I picked the report up and started to read... Ultrasound: NORMAL, MRI: not so normal. There was a small approx. 5mm large area on my liver that appeared to be benign given its shape/location/whatever other diagnostic tools radiologists use to determine tumors from benign stuff. I of course FREAKED OUT. I called my PCP back screaming "How could you say this is NORMAL?" took the day off work, had my mom come out to hold me as I thought to myself I can't believe it's already metastatic...DAMN. Skip ahead.. after another painful week and a half or so, and a PET/CT (ordered by Dr. Sato to apparently "ease my mind") I received the good news on March 18th that the spot was indeed benign and that my full body scan (the PET/CT) was NEGATIVE. A small celebration took place in the shape of a big dinner at Texas Roadhouse w/ grilled chicken (my old fav), rice pilaf, and a yummy baked potato. Not to mention some delicious cinnamon rolls.

I was told the spot was most likely a hemangioma, a small FNH (focal nodular hyperplasia) or some sort of vascular deformation. (although I know what these mean, I'll leave it up to you all to investigate their definitions if you so desire).

Step 3: Find a local oncologist who would basically be willing to listen to and do Dr. Sato's every word. Much harder than it sounds, and it even sounds hard. I basically had to forgo going to anyone in the MGH/MEEI community because they all sided with the infamous Dr. G. and that it wasn't useful to do liver scanning since there's no proven treatment for liver metastasis (to me that seems like saying 'well since we don't know the cure to any of these things, we'll just stop trying'. 'what you have a liver tumor?' I can't hear you, I'm blissfully ignorant!') -- yeah not going to work for me. So I found a great Dr. at Dana Farber who was willing, though he constantly repeats "this is not what I would do (well dude you wouldn't know what to do actually, b/c you treat skin cancer not eye cancer!), but I will support you and follow you anyways". Like I said great guy, at least very open to working w/ Dr. Sato and it helps that Dr. Sato is well known in the melanoma community to say the least.

Step 4: Get set up with some sort of adjuvant treatment. My first approach was a vaccine therapy trial at Sloan Memorial Kettering (which if any of you are CM patients and are curious about I'd be more than happy to share the details). Unfortunately you had to have a specific tissue-type to be able to participate in the trial, and I did not. Bummer. The next try was to start an application for a fairly new chemo drug Sutent which was being used in a few clinical trials for ocular melanoma. Dr. Sato was currently using it, but only in patients who had metastatic CM and a guy on the West Coast was using it for adjuvant treatment (though it was piggy-backed with Cisplatinum and Tamoxifen) for high-risk for spreading patients like myself. The suggestion had been to try and get Sutent on my own, off label through either my insurance co. or through the drug company and Dr. Sato would create the protocol for me to follow (as he was/still is considering an adjuvant trial with Sutent for high-risk patients, given the promising results seen in the current trial).

...insert Jeopardy waiting theme music here....

After almost two months of waiting (started the application March 11th and received my first bottle on Tuesday May 6th) I had finally gotten Pfizer to provide me with 6 months of treatment: FREE! The drug typically costs $4,000 per cycle for the dosage I am using - crazy huh? I of course had to go through the whole lot of having my insurance deny it a few times before being able to actually apply for assistance through the drug company, but for now that is all set.

Now the only thing that was waiting between me and starting this treatment was that Dr. Sato wanted to do a follow-up MRI of my abdomen and Chest CT to have the most accurate and close to starting date of Sutent baseline images (i.e. making sure I was still actually without any metastatic disease). Time for another freakout. I was not ready to get another scan, I had tucked that little scanxiety box away in a corner to collect dust bunnies and cobwebs until the end of June when I thought I'd be going for my next set. Unfortunately, the decision was either have the scans now and start the Sutent if everything was clear, or wait until June for the scans and if clear start the Sutent then.

As I was convinced by my many friends, family, and of course loving bf that it was absurd of me to come this far to push so hard to be proactive and then pussy out, I decided to go ahead and get the damn scans...waiting yet again for results.