New Lease on Life?

Well, I'm not 100% sure how I feel about it, but my surgical oncologist proclaimed me "officially" stage 1B and NED yesterday. No evidence of disease. NO evidence of disease. No EVIDENCE of disease. I have found that depending on where you put the stress, this little phrase can sound more or less reassuring. I really am going to have to learn how to live with uncertainty, aren't I? 

So, my surgical oncologist was back from Greece and ready to tell me his thoughts. He showed me the report from the Gottlieb lab (oart of the Loyola family), which said my node was "trace positive". While we sat together, he called the Loyola lab, where my results had been looked at by the melanoma expert. She said my node was "absolutely negative".

I explained to the doc that although I appreciate the good news (and I do!), I still feel uneasy. He said he understood. I asked if there would be any benefit to running any scans to be sure. He said that even with financial considerations aside, scanning me at this point would be a bad idea for my health. He feels I am somewhat likely to have a false positive result from a scan that would take us down a bad path, and extremely unlikely to have any metastatic melanoma in other areas of my body.

To be more certain, he asked me to schedule an appointment with Dr. Joe Clark, the medical oncologist who will be on my team if I have active disease (which it seems I do not). He said that Dr. Clark can meet me, look over my file, look at the weird lab results and decide what it all means. 

I do find that visit with Dr. Clark to be reassuring, at least partially. He has an excellent reputation in the field of melanoma, and although I haven't met him yet, I have confidence in his ability to sort through this mess. I'll see him on September 2nd.

Until then, I'm going with stage 1B and NED, baby! This calls for some celebration. 

My friend took me motorcycle shopping! As I've been going through the (mindblowingly slow) process with melanoma, I have been trying to focus on "what's next" when I get through it. I want to learn a new skill, find some adventure, and have fun with my husband. Learning how to ride a Harley fits that bill! 

My husband and I and two of our oldest friends signed up for a Basic Rider Course at Rock Valley College for the weekend o September 20th. At that time, we'll do a full weekend of learning and prepare to get our motocycle licenses. 

Before then, we need helmets, gloves, sunglasses, and boots. Shopping! It also seemed like a great time to sit on some motorcycles and see how they feel. 

We went to the Harley-Davidson dealership in Lisle, Il and met an AWESOME salesman named Joe. Joe showed us the ropes and treated us like "real" customers, even though I felt like I was pretending to be a biker chick, haha. We found two bikes to consider, one new and one used. 

We gooofed around with some helmets (hello, selfie!)...

...and generally had an incredibly fun time. I'm going to keep living my life to the fullest and enjoying myself. Melanoma is going to have to wait for ME! 

Roller Coasters...

Let's start off with a picture of a roller coaster I DO want to ride, okay?

That's Goliath and it's at Six Flags Great America, about 1 hour from my house. I want to ride it. A lot. It's new this summer, and it looks exciting and fun and I would love to go there with my boys, in spite of the fact that melanoma has me lying flat on my back.

Would now be a good time to talk about roller coasters I do NOT want to ride? Good.

Yesterday I had my big appointment with my surgeon to get results from the sentinel node biopsy. That is, I met with a Physician's Assistant who is covering for my surgeon while he's on a (probably very well deserved) vacation. Her name is Beth and she came in to introduce herself to me when I was done with surgery last Thursday. She shook my hand and told me she was familiar with my case and that she would be ready with "preliminary results" when she saw me yesterday. I knew the results would be preliminary, and I knew it would be Beth. I was fine with both of these facts.

I went to the appointment and we made nice small talk about how my wounds were healing (very well, thank you very much) and how my surgical experience had gone. She peeled back the dressings on both incisions, tugged at the drain in my leg a little, and judged me to be healing very nicely.

She started with the flesh removed from my leg. Clear of cancer. Hooray! Huzzah!

And then, she said "however" and I said "shit". That's how quickly this stuff changes, I guess.

Poor Physician's Assistant Beth was charged with telling me that there was melanoma found in the one node removed in my biopsy. I feel for her. I do. She seems like a nice girl, and I started to cry immediately. Let me try to summarize what she said:

-There was a "small amount" of melanoma in my node.
-The preliminary results don't tell what percentage of the node was cancerous.
-There's an additional stain that needs to be run to finalize these results.
-That stain will tell us what the percentage will be, and will help guide the next steps.
-She wants me to have "all the scans" early next week.
-She is going to speak with my oncologist immediately to see what else he wants.
-She talked me through all of my options on second opinions.
-She agreed to start the process for me on getting slides, etc. sent to Northwestern Memorial Hospital.
-She offered to sit and talk with me through whatever questions I may have had and offered me the opportunity to call her with any questions that would come up later.
-My husband asked if there was any chance that the finalized results would show no cancer. She said that no, that was highly unlikely, and that what we were really looking for was the amount.
-She promised to call within 48 hours with the results.
-She reminded me that this was not the "end of the road".

And yet, I continued to cry. My life is just not something I'm prepared to give up right now. Does that sound selfish? Like, I just love my life. I love my husband. I love my sons. I love my job. I love my friends. I love my dog. I love my stupid messy kitchen. I love it all. The good and the bad, the complicated, and the ugly. My heart just shattered into a million pieces.

My husband and I left that office and we went to the park to talk. That was hard. I couldn't return home in the state I was in, because we weren't ready to share this news with the boys just yet. I would do anything in my power to protect them, and I was not prepared to hurt them yet. We hugged and cried and talked for a while and then we went for dinner, and then we went home to read and research and regroup and get ready for battle.

At 9:15pm, the phone rang. It was Beth. She hoped that it was okay that she had called so late in the evening and she knew it was unorthodox, but she had news that she needed to share with me. After my appointment, Beth had gone to the lab to follow up on my stain. She talked to the pathologist.

She said that she couldn't believe it herself, but I was that "one in a million patient" who gets the news that the first run on the node was incorrect. The final stain showed that there were "microscopic atypical cells" in my node, but absolutely "no evidence" of metastases in the node.  There is no metastatic melanoma in that node.

I stammered for a moment before I found the ability to form a complete thought.  What came out was something along the lines of "That's amazing, and I don't want to look a gift horse in the mouth, but will you forgive me if I tell you that I'm a little doubtful...after the appointment we had earlier today?"

We shared a laugh, and she said that was obviously completely understandable. She explained that the pathologist had signed off on the report, and he was absolutely confident that there was no melanoma in the node. She reminded me that they don't just sign of casually. She also told me thaat she was still going to follow up with the oncologist, she was still going to arrange the second opinions with Northwestern Memorial, and she was still going to call me on Thursday. She just didn't want me to have to live with the idea that there was melanoma in my nodes if there was not, in fact, melanoma in my nodes.

So there it is. That is my story. I don't know how to process it. I don't know how to feel. I spent my day absolutely enjoying the joy of being alive, and yes, crying off and on. I'm happy. I get to remain happy.

But.

Will you judge me if I admit that I need that next call to come? Need it like I've never needed a call in my life? Need it like I need air? Ugh. Melanoma is going to teach me patience, right? Whether I want to learn it or not, I'm going to have no choice but to learn.

So, while we wait, how about an incision picture since I'm in the club now? Heckuva an initiation for this club...

Waiting for results

Later on today, I will get the results of my sentinel lymph node biopsy. I came to this blog today to say out loud that I have never been so frightened of anything in my entire forty-five years of life...and I've been pretty afraid a few times in the past.

My surgeon is out of town for three weeks (I guess even surgical oncologists can have vacations), so I'll be receiving the results from his Physician's Assistant, who I met briefly after surgery. 

I am trying to steel myself for what I will hear today, but it isn't easy. If my nodes are clear, that will be amazing! Then, I'll just need a recommendation for a dermatologist who specializes in melanoma, because I can't go back to my current dermatologist who is predominantly a cosmetic dermatologist. I have no complaints with how he handled my case, but it's time to move on.

If the nodes aren't clear, I guess it's a whole different ball of wax, and I'm going to have to get very serious. I'm weighing my options. I have been referred to a very highly regarded melanoma oncologist in Chicago, who is affiliated with the Loyola Medical Center. Although this doc is highly regarded in the melanoma world, Loyola is not a comprehensive cancer center. I have the option of moving my care to Northwestern Memorial (Lurie) or The University of Chicago, which do have comprehensive cancer centers and doctors who are experts in melanoma. Many melanoma patients choose to be cared for at top cancer programs at Memorial Sloan-Kettering, MD Anderson, or Dana Farber, but given the fact I live near high quality programs in the Chicago area, I'm having a hard time justifying travel expenses for those programs.

I honestly don't know what I'm going to do if those darn nodes aren't clean and I am hoping against all hope that I don't have to find out later today.

Fingers crossed. Praying. Hoping. Staying focused.