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.

Field Trip!

Today is day 4 post-surgery, and I finally feel kind of "human" again. I think I'm going to remember day 3 as "the hard one", where the lingering sluggishness from the anesthesia and the dizzyness / nausea from the meds made the day really hard to manage.

The good news for those of you facing this surgery is, I really don't have much pain. I think I stayed on a full dose of pain meds (Vicodin, every 4 hours) mostly because I had heard that I should try and "stay ahead of the pain" rather than try and "chase the pain" with meds, which doesn't work as well. Frankly, I don't think I had much pain, and the meds were able to keep it more or less at zero.

Here's a photo of my bandage and the surrounding area on day 4. Hubby said "whoa!" when he saw my swelling, but I actually don't feel like it's too bad.

Last night I started to alternate my Vicodin with a dose of 1000 mg of Tylenol. Today, I'm going ro reduce the Vicodin dose to 1/2 and continue with the 1000 mg Tylenol on the alternate doses for 24 hours and see how that goes.

Since I'm finally not dizzy, hubby wanted to take me on a mini-field trip! We went to Great Clips to have my hair washed. Big day!  Never thought I would look so forward to this kind of outing, but it was a treat. Here are a few photos from our outing. 

Friends

I am so humbled by the love I have been shown as I recover from this surgery. I just don't know what to do with all this emotion, so I'm going to try and channel it into the healing process.

I don't feel well enough to type for a long time, but can you imagine how wonderful it is for a French teacher to have snacked on this delicious tray of incredible, fresh food with sunflowers by her head? The best! Almost like being in France. Merci, Erin.

I am hopeful that tomorrow will be a better day. I'm reducing my use of this Vicodin that makes my head spin, and my pain is very manageable.  

Wide Local Excision / Sentinel Lymph Node Biopsy

I am home from surgery and recovering in bed as directed. I promise to follow the doctors' orders to the letter so as to be able to give an accurate picture of recovery. 

We arrived at the hospital at 6:00 am and they took me for a urine sample. Wanted to be extra sure I'm not pregnant! Haha...that would have been quite a surprise. 

I changed into a gown and was directed to a hospital bed in what would become my recovery room later that day. Hubby couldn't be with me for this brief part, because sometimes spouses faint during IV insertion. MY hubby grew up on a farm and has been there for me through three pregnancies and deliveries...he's not the queasy type. Still, we didn't make a fuss.

After my IV was in place, hubby joined me and the parade of docs and techs began. When the anesthesiologist came in, I explained that I had had problems with vomiting following oral surgery in the past. She promised to use all available medications to help me with nausea and also to give me "extra" fluids to help with my caffeine withdrawal headache. Nice! 

Met with the surgical oncologist, who told me that his review of the biopsy slides came in with slightly better news than the original lab. The comparison:

Breslow

Original 0.96mm  New 0.81mm

Clark's Level

Unchanged at 4

Mitotic Rate

Original 2 / mm2    New 1 / mm2

He told me that based on the new Breslow, he felt he could reduce the surgical margin to 1cm from 2cm if I wanted. I said I didn't want that, because I want to go big or go home. He asked if I would be okay with 1.5 cm, which might help avoid the skin graft, and I agreed to that. 

Next thing I knew, they were ready to wheel me away and tears started to trickle again. I just didn't want to leave my husband...it was so hard to go! 

Next thing I remember was waking up in the OR with everybody telling me how great it had gone. No skin graft! Woot! After what seemed an eternity, but was probably just 15 minutes, they wheeled me into recovery and brought in my husband. What a relief! 

Spent a little time in a recovery room with an actual harpist playing. That was surprising, but nice. 

Surgery was on a Thursday. My wound is covered in a "no maintenance" dressing, so I can't see anything at all, which is good, I suppose, because I'm not ready to see it yet! The plastic surgeon will take care of it on Monday. I also have a brace to keep me from bending my leg. The dog finds that a little confusing! 

I'll be ready to share the details of incisions and recovery after s few days have passed. 

Overall, I'd have to say this whole thing went very well, and I sure am glad to be home with my family.. 

Radioactive Tracer, Pt. 2

Oh my goodness, if you are worrying about the radioactive dye procedure before your sentinal node biopsy, I insist that you stop right now! It's going to be fine! 

I have read so many times that the "worst part" of the WLE / SLNB surgery is the dye they inject. I had mine tonight, I cried because I was scared, and then...nothing! 

We arrived at the hospital and checked in. While we were checking in, we saw this price list. Holy moly! Hospitals are expensive! I've got a 3 hour surgery tomorrow...looks like the prices stack up pretty quickly. 

Yikes! 

They took us back to a waiting room right away, but I only waited for two minutes before they took me back.Terrible news! My husband wasn't allowed to go back with me. So much for my big plan of having him hold my hand! The very nice and very sorry nurse told hubby that I would be back in an hour. 

I was escorted back to the procedure room, and since I wore a dress and the lesion was on my leg, I did not have to change into a hospital gown. Hooray! 

The doctor came in and tried to calm my nerves, but he admitted that the procedure is unpleasant. I like an honest doctor! He did a very nice job of educating me about how lymph nodes work and why the cancer might be hiding in there, but I won't bore you with that.

This nice doctor explained that there would be 4 injections and that as doctors go, he tends to do the injections quickly. He promised that he would keep talking through the procedure. 

Then he made the mistake (poor guy!) of asking me if I wanted the tech to hold my hand. Oops! That reminded me of the study I posted earlier and how a stranger's hand doesn't help and suddenly I really needed my husband and the tears started to roll.

Well, the injections themselves were no problem. I counted them with the doctor, and it's first a prick like a "normal" shot, followed by the bee sting part. I would estimate the rather unpleasant burn lasted 10 seconds per injection. Really...no big deal. 

Then, a tech scurried away to get my husband because I was still crying a little. Geez, what a mess, but the result was my husband's face and that was nice! 

They put me in the machine to take the pictures, and the machine looks like this:

It took about 20 minutes to take the pictures and the tech talked me through the whole thing. Sure enough, the node lit right up! Success! 

The doctor came back in with a handheld geiger counter to find the node and mark it. He marked it with an X with a Sharpie marker, very high tech. He said I can shower, but not to scrub off the X. Okay!

The entire procedure took one hour, start to finish. Hubby took me out for dinner afterward and I felt guilty about making such a big fuss.

Surgery early tomorrow morning. I've been asked to stop eating and drinking at midnight and to shower in the morning with Dial (they were specific!) antibacterial soap.

It's on!

Radioactive Tracer, Pt. 1

Today is the radioactive tracer procedure, in preparation for the sentinal node biopsy and wide local excision tomorrow. I would like to say I am less scared now as I head toward the hospital, but I do not want to lie to you. I'm scared today, and little tearful. I am telling you this because maybe you're facing your own radioactive tracer, and I think it's pretty normal to be scared, even if you're a brave person. 

I read a quote today by Victor Hugo, and since I'm a French teacher, it spoke to me a little extra. It said, "Curiosity is one of the forms of feminine bravery." How about that? Cool, right? One of the ways I can be brave about this adventure is to be as curious as possible, and learn as much as I can. 

Here are some things I've learned:

1. There will be 4-6 injections.

2. They will feel hot like bee stings.

3. They will last "a little while", but not forever.

4. You can't have a topical anesthetic because it would mess up the circulation in that area, and circulation is what this is all about.

I guess this test is supposed to tell the doctor which node is the first one the melanoma might have reached, but I've learned that there's often a "tie" and the surgeon actually has to take out more than one node, and this is not a cause for concern. 

I read this awesome study about how holding a spouse's hand during times of stress and pain reduces women's experience of pain. It doesn't work with strangers...it has to be someone you love.  I am blessed and fortunate to have my husband with me today, and he has promised to hold my hand. 

I'll be okay.

You can read about the study here, if you're curious. 

http://saynotostigma.com/2011/09/attach-and-give-your-brain-a-break-from-stress/