What now?!

Things seemed to be quieting down a little bit, but I guess I was mistaken. I scheduled an appointment with Memorial Sloan-Kettering for a treatment consultation. I scheduled  PET-CT for next week in advance of the MSK appointment. And then...I went for a routing mammogram.

Sure enough, got the call today that I have to go back tomorrow for more testing on my left breast. Diagnostic mammogram, followed by breast ultrasound.

To be honest, I don't even know what to think. In my mind, I'm wondering if this is going to turn out to be related to the melanoma or breast cancer. My husband has reminded me a million times that it "might be nothing", but I guess I've passed the point where I think ANYTHING can be nothing.

Mammogram / ultrasound tomorrow, PET-CT Tuesday. Am I getting closer to any answers? I sure hope so.

Medical Oncologist

Well, it's been a little while since I've felt like typing. I haven't had much to say, and a dear friend of mine committed suicide two weeks ago. To be honest, I'm in the dumps. I decided to try and dig myself out a little bit to type this update. We'll see how it goes.

I went to see the medical oncologist at Loyola today. It was the first time I have met him, and the appointment went very well. He agreed that my sentinel node biopsy results are still "unclear". It seems that the node is likely "trace positive", although there are competing reports. In his mind, it seems best to consider the node positive. That having been said, he feels that the node is only barely positive, and it seems unlikely to him that the melanoma would have spread beyond that one node. Unlikely, but not impossible. Ugh.

These are the options he laid out for me today:

1. Full dissection of the groin nodes. He told me he would be against that option personally because the risks of lymphedema with a groin dissection are significant. Given the significant chance that the nodes removed would be negative, he would advise against the dissection. I fully agree.

2. Interferon.  I explained that I've done my reading on interferon and that I understand it could increase my recurrence-free time by a year or so (if I'm going to have a recurrence) but that it doesn't really increase overall survival. He said that was accurate, and that he could "go either way" on whether or not to recommend the treatment. Basically, if I said I wanted to pursue the Interferon, he would support me, but he said he didn't want to push me in that direction. He offered the option of a one-year course of treatment or a five-year lower dose treatment.

3. Do nothing and pursue the standard follow up regimen for my stage while keeping a close eye on the nodes, etc.

Given the options, I believe I'm inclined to do nothing. My exact question to the doctor sounded like "I think I would prefer not to do the Interferon, but before I decide to do 'nothing', do you think it would be in my best interest to pursue a second opinion?" He said that if it were him, he would get another opinion for peace of mind.

I admitted to feeling a little guilty about seeking another opinion. It's funny, because this whole process has really pushed me out of my zone as far as assertiveness. He said "You are the consumer. Don't forget it. You are the boss. You have every right to seek a second opinion, and I would advise you to do so before making a decision. Your lab results are not as clear as we would like them to be, so a second opinion is a good idea."

So there you have it.  I have arranged for my slides to be sent to Memorial Sloan Kettering in New York. I guess I'll be heading out for an appointment sometime soon. I hope that will help me to put this whole thing to rest.

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! 

Argh!

 After one day of Lollapalooza in Chicago, is it okay if I tell you that seeing kids sitting on reflective blankets like this one makes me want to PULL MY OWN HAIR OUT?

Thank you, That is all, (Heads cropped

to protect the innocent.)

 

UPF Clothing and Lollapalooza, baby!

At the end of the week it's finally time for Lollapalooza. It's hard for me imagine that I'm already walking well enough to be able to go to Lollapalooza, because it's only been three weeks since my surgery and we walk quite a few miles at the festival in Chicago, but I think I'm going to be okay.

I'll be bringing my leg brace to the festival and I qualify for an accessible wristband which will help me find places to sit (it will be HARD for me to sit down in the grass) and accessible restrooms, but all-in-all I don't think I'll be needing too many accomodations and I'm hoping not to use them unless really necessary. I'm ready to get back to my "normal" life as much as possible!

The main thing that I've been obsessing about as I prepare for this festival is the amount of sun exposure I'm sure to receive while I'm there. The weather gods seem to be with us this year, and the high temperature for each of the three days will only be seventy-five. That is amazingly good news, as we are used to enduring temps in the nineties. Good temperatures aside, there's still plenty of sun in my future over the weekend.

My Lollapalooza buddy and I headed out to REI to look at UPF clothing this evening. I've finally decided that sunscreen just isn't going to cut it for this kind of exposure and I should be wearing long sleeve and UPF protection. I'm hopeful that these items will help reduce my anxiety about being in the sun.

I bought a long-sleeved shirt and a (cute) hat and was truly startled by how expensive these items were. They cost me almost $100!  What a shame. With all the recent news about the Surgeon General's Call To Action about melanoma and news about the US House of Representatives passing the Sunscreen Innovation Act this week, maybe we will see some changes in the availability of high quality, lower cost sun protection. We can hope!

Looking forward to three days in the sun and lots of live music (and crowds) later on this week. Bring it.

Progress Check

Today I am two weeks post-surgery and I thought it would be a good day to post that I feel great! I am walking *almost* normally, but I'm pretty slow. I have no pain at all, but my knee doesn't work the way I expect it to work. Each day gets a little better. The node incision is still a little tender, but nothing to get excited about.

To be honest, I feel better than I expected to feel. 

I still haven't heard about the second read of my node. I'm hoping that they're going to call, and not make me wait until my next appointment on August 7th. I am living my life like my nodes are clear...I sure hope they are.

This is what my wle incision looks like after two weeks. Not bad, right?

Practicing my patience...

How many times over the past seventeen years have I asked Small Fry, Medium Fry, and Large Fry to practice their patience? A million? "Practice your patience" is probably the most issued parental command at our house, and has been for quite a few years. Patience is hard, isn't it?

It seems like my husband is frequently reminding me to practice my patience, but he never needs to be reminded himself. He just IS patient, a thing I may never understand. Lucky for him, because I find all of the waiting involved in this first phase of melanoma diagnosis and staging to be absolutely infuriating! And yet, there is nothing anyone can do through this process but practice their patience, is there?

There are so many things I need to be patient about right now. Be patient while waiting for my wle / slnb wounds to heal. Be patient waiting to rejoin the outside world without a leg brace. Be patient about waiting to drive. Be paitient about gettting the results of the second opinion on my sentinel node biopsy. Be patient about having a final stage for this melanoma. Be patient about finally getting that designation of N.E.D (no evidence of disease) so I can start marking how long it will have been since I put this cancer in my rearview mirror!

Waiting is hard, but it's not impossible. I just have to keep practicing.

Something that amuses me a little is that the Physician's Assistant who is managing my case while my surgeon enjoys his (well-deserved) vacation had to call the surgeon in Greece to update him on my case. I find it pleasantly amusing that my doctor may have been looking at this scene while he discussed my lymph nodes. Is it almost like I got to go to Greece myself? Um, no.

I will see the surgeon on August 7th, and that's the day where I'm expecting to get my final "official" stage and I'm hoping to be told I'm N.E.D. Although I may get the call about the second reading before that, I have decided not to hold my breath while waiting. I've made another decision as well about my future care. I have decided that even if the node is NOT clean, I'm going to leave my care with Dr. Joe Clark at the Loyola Medical Center.  I have agonized over the fact that Loyola is not on the list of Comprehensive Cancer Centers and I have wondered if I should take my care to Northwestern Memorial or the University of Chicago, which are two local hospitals that do have that "comprehensive" designation. I have concluded that Dr. Clark is doing excellent work with melanoma and is leading several clinical trials himself. At every turn, Loyola has treated me like a human being, not just a number or faceless patient. I believe that I can get the very best personalized treatment from excellent doctors at Loyola, and I can't think of any objective reason to move my care elsewhere other than the fact that I've done reading on the internet that has embedded some frightening thoughts in my mind.

That having been said, if the node does come back positive for melanoma after it's second reading, I will keep my mind open to the possibilities. It seems I will just have to jump off that bridge when I get to it!

In the meantime, here's my post-surgery update:

-Surgery was 7/10 and today is 7/21. It would be fair to say that I have no pain, but I have RIDICULOUS itching. Seriously, that itching is out of control!
-I cannot bend my leg and I am still supposed to wear my knee immobilizer when I am up and around.
-I am unaware of my node incision, and sometimes forget that I had any incision there at all. Many people have said their node incision hurts more than the other, larger incision, but that has not been the case for me.

Here's my photo for today, day 12 post-op. I think I'm doing really well! I put a pen in the photo because I didn't have a ruler near at hand. I hope it gives the photo some context as far as size. The photo doesn't really show the indentation that accompanies the incision, but Small Fry did say "Mom, it kind of does look like a shark bite." yesterday, so there's a definite dent.  I will wear my shark bite proudly!

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/

Pre-Op Phone Call

The hospital called today with my marching orders for my surgery the day after tomorrow.

Some highlights: 

-She said I'm "only" forty-five. That made my day.

-No food or drink after midnight.

-I should shower with Dial anti-bacterial soap.

-I should take my meds in the morning with "just a tiny sip" of water.

My favorite part:

Her: Do you snore?

Me: Um, maybe a little?

Her: Do you snore louder than you speak?

Me: I don't know, I'm always asleep.

Her: Does your husband complain?

Me: He wouldn't dare! 

Her: Okay. No, then. 

This day is getting closer and closer. I'm getting closer and closer to being ready! 

Plastic Surgeon

9:15 am

Today is the visit to the plastic surgeon that I have been anticipating / dreading since I met the surgical oncologist on June 24th.  He is supposed to tell me if I'll be needing a skin graft on my leg, or if he thinks he'll be able to close the incision with sutures. This will make a huge difference in my recovery, as all accounts seem to say that skin grafts are not a walk in the park.

I'm trying not to be pessimistic, but I have a gut feeling that I'm going to need a skin graft. When I met the surgeon, he tapped around at my leg and said "Well...it's going to be a big incision and this are is pretty tight. Let's see what the plastic surgeon thinks when he meets you."  In my experience with doctors, it always seems that they say "cautious" things like this when they expect the news to be unpleasant. Sort of like my dermatologist when he said "Maybe this ISN'T melanoma, let's hope it isn't." He knew, and he did not try to get my hopes up, which I appreciate as I was able to use that time to do a lot of learning. Guess what? Since meeting the surgical oncologist, I think I've read every single page on the internet about skin grafts.

I'm ready.

Here's a little plastic surgery humor to keep us busy while I wait for the appointment to happen at 4:00 today.

4:00 Plastic Surgeon Appointment

Doctor is very nice and efficient, and does his best to put my mind at ease. If the hospital at the Loyola Medical Center is anything like the doctors' visits, I'm going to be fine. 

The surgeon tells me he will "try" to close with a "flap incision", which will involve "moving some flesh around" from another part of my thigh, and will result in a jagged, crooked incision, sort of like the "shark bite" I've been expecting. He asks me to be prepared for a skin graft, as he can't rule it out until he sees the actual situation. He also asks me to be prepared for an overnight stay because of IV pain meds. 

As for recovery, he says I will be on "restroom only" bedrest for two weeks and then we'll see what happens after that.

So, that's what I know. It's not great, but it could be worse.

Two more days of waiting...

Sharks and Bees!

It seems every description of the dye injections for the sentinal node biopsy included the words "bee stings" and every description of the scar left behind after the wide local exclsion includes the words "shark bite". 

Well, I've never been stung by a bee and I've never been bitten by a shark, so I've been obsessing about the unknown lately.

Sharks and bees! 

For those of you who haven't had the pleasure of a surgical oncologis visit yet, I did ask about those bee stings. I was reassured that many of the stories I've heard have to do with an older dye that has now been improved. I was told that the new dye is much "less caustic" than the previous dye, and I shouldn't waste any time worrying about it. I'll try. 

Now, about that shark...

Today I went to the Milwaukee Zoo with my family on a mini-pre-surgery vacation. We had the opportunity to touch a shark! I didn't punch that shark in the snout to make it retreat, because I decided I don't need any bad shark-karma, if that's a thing. 

I did see some very good sun advice in the gift shop today, and I'm including some photos from the sting ray and shark exhibits we saw today. 

They don't look so bad now...do they? 

It's good to have goals...

We're off to Summerfest in Milwaukee today, which means it will be our first "real" day in the sun since I received "The Call". Okay, I'm a little nervous, but I'll be fine.

Friends, today it is my goal to not spend my day worrying about all the young girls chasing the rays. I will not randomly shout out "ARE YOU WEARING SUNSCREEN?!" at strangers. Okay? That is my pledge to you today.

I will act right in public.

I will not embarrass my children.

I will not obsess about the sun all day.

I will live my life.

Facing Fear

This is me just minutes before I finished  my first marathon in Detroit in October of 2013.

 I was scared that day. Would my training be enough? Would I finish? Would I be hobbling at the end? Would I be disoriented and dehydrated? Would I embarrass myself?

As it turns out, I fell down at mile 12 of that marathon, when a pedestrian crossed in front of me on the course and I sprained my ankle pretty badly. I got up, dusted myself, and ran the next 14.2 miles on that ankle and missing my goal finish time by only 4 minutes.

I let that fall at mile 12 get to me, and I was angry at that pedestrian for a long time, until I realized that he gave me something that I wouldn't have had if I had "just" run a marathon. He let me know what I'm really capable of. I'm capable of getting up, dusting myself off, and finishing what I came to do. I'm trying to channel that experience as I face this surgery, but I'm finding it difficult.  I guess that's because the marathon was a place I wanted to go, and that operating room really isn't.

Today is the July 3rd, my surgery is on July 10th and I can't lie...my fear is starting to be a real thing. I'm putting on a brave face for the kids, but hubby definitely knows it's getting to me. I'm afraid of a variety of things, some rational, some irrational. The funny thing is, some of the irrational things I'm afraid of are eating up the most of my brain power! Blech! It seems no matter how many times I tell myself that it's ridiculous to be afraid, my brain just resists. Here's a little list of some things I'm worried about. I'm making this list because I'm hopeful that if any newly diagnosed melanoma friends come by this blog in the future, they might see that they're not alone in their worries or fears. I'm afraid of...

-The radioactive dye procedure. I keep hearing that the injections feel like bad bee stings, and I've never been stung by a bee (knock wood!) and I don't know what that feels like. I'm guessing it's not pleasant.

-General anesthesia. I don't like the idea of being put to sleep. I just don't. I'm afraid of my experience when I wake up. Where will I be? What will I see? Will I be alone? Where will my husband be?

-Nausea. One in three people face nausea and vomiting after general anesthesia. When I had my wisdom teeth out in college, that's what happened to me. Call me crazy, but I'm scared of this.

-Pain. (Enough said, right?)

-Pain medication. Yes, I know it's prescribed for a reason, but I can't help but worry about side effects, addiction, etc.

-Recovery. When will I be able to walk properly? Will I feel ready to go back to school one month after surgery? Willl I be able to run again?

-Scarring. Will it really look like a shark bite? In a good way (haha!) or in a sadly mishapen leg way?

-Results of the node biopsy. That's all I'm going to say about that. Scared!

In some ways, waiting for this surgery has been like training for a marathon. I will have had a full month (Too long! Too long!) to "train" for this procedure. I've been learning about nutrition and ways to avoid the unpleasant intestinal side effects of pain medications. I've reserved a hotel room near the hospital so I can get the best possible night's sleep before the surgery and spend some quality time with my husband. I've seen photos of every single melanoma incision available on the internet. I've learned about the surgery, right down to the very last detail...and I'm still scared. I have decided to accept the fact that fear in the face of this procedure is a normal, human response, and I'm just going to have to welcome it.  I'm hoping that I can stop being angry about this melanoma (like I was at that pedestrian) and let it teach me something about myself. I guess I'll know soon enough what that lesson will be.

Here are a few other pictures of me doing things that scared me at the time. I got through these, and I'll get through this surgery too, no doubt about it!

Me in the big glass box in the Willis Tower in Chicago...hanging out over the void. Good times, good times.

You know what? After this whole surgery and recovery thing are over, I just might have to jump out of another plane...

Snowshoeing in a million inches of snow, when I'm known to trip over my own feet just walking from the living room to the kitchen? We did it!

If you're facing melanoma surgery in the near future, I encourage you to think of the times you've been brave. There are probably more than you think there are, if you think about it. Facing fear is just part of life, I guess, and melanoma is just handing us one more way to do that.

Trying to make the best of a bad situation

Eight days until the surgery process begins, so I'm taking care of loose ends and trying to "fill my tank" with as many fun activities and visits with friends as possible.

Today I had the unpleasant task of having to cancel our 10 day trip to Denver / Mount Rushmore / Yellowstone National Park. The sad reality is that we've been dreaming of taking this trip with our boys since before our oldest son was born 17 years ago.  We finally agreed that we had better take this trip before Scott took off for college. We booked 5 flights, a teepee hotel in Wyoming, and started making some awesome plans.

Ugh, melanoma!  

The doctor encouraged me to delay my surgery so we could take our trip, and then offered me a surgery date of the first day of school.  This would have required missing the first two weeks of school AND waiting an additional month to learn if my nodes are clear of cancer.  As a family, we decided it just wasn't worth the wait.

Ugh, melanoma!

Spoke to the representative at Orbitz today who cheerfully informed me that yes, I could cancel my trip for a mere 50% in fees. It's just  little $775 loss after all! The good news is that whe I explained that I needed to cancel for health reasons (Hellooooo, I have cancer!), she said I could submit medical documents and MIGHT get a full refund.

Ugh, melanoma! Labels

Hubby invited the boys and I to go to Milwaukee for Summerfest in Milwaukee as a "replacement" trip. Ha! Does he really think that Mötley Crüe and Alice Cooper are a replacement for Yellowstone National Park?!
I guess they will have to be. We will make the best of it and we will enjoy our time together.  It's on.

Summerfest Lineup

Will I ever look at sun in the same way again?

I'm thinking about my family today. Well, I think about my family every day, but today, nine days before my melonama surgery, I'm REALLY thinking about my family.  Here they are:

There's lots of sunscreen in this photo, but I can't help but notice how comfortable we all seem being in the sun. Wow, that sure has changed for me lately. I've always been careful in the sun, and I have done my best making sure the kids are sunscreened, but of course, nobody's perfect. In my mind, this melanoma snuck up on me when I was a kid, and has been waiting to rear its head for a lot of years. When I was a little girl, I practically didn't even know it was summer if my shoulders weren't blistered. Ouch! I can't really blame my parents for letting me get sunburned in the seventies, because they didn't know any better...but I do know better, and I've not been perfect about sun exposure for my kids. My husband, whose experience with the sun has always been easy and tans beautifully (ha! not me!), has always been, um, relaxed about sunscreening the kids.  My anxiety about this is pretty high now. They haven't been burned frequently, but each of those faces I love more than anything else in the world has been burned at least once.

I'm taking everybody in for screenings with the dermatologist, and I'll do even better with the sunscreen, but I find myself wondering...will I ever look at the sun in the same way again? Will the sun always seem like an enemy?

Have any of you experienced this feeling? I'd love to hear your thoughts!

"Did you catch it early?"

Melanoma friends, is this the hardest question to answer, or what?!

"Did you catch it early?"
"The good news is melanoma is very treatable if you catch it early!"

Here's the problem...melanoma is a tricky beast. Somehow it has convinced the American public that it's really not a big deal. No worries, we'll just catch it early. Why would we catch it late if we can catch it early instead? Easy breezy. Nothing to worry about here!

Wrong.

It's true, melanoma is pretty "treatable" if you catch it when it's tiny, but I'm not exactly sure how that's done. My own melanoma was tiny by any reasonable standard. Smaller than a pencil eraser, for sure.  Yeah, it was a dark color, but lots of moles are dark colors. It was small. There is no chance that anybody without melanoma experience would have thought that spot was dangerous in the way it turned out to be. We're looking for big "scary" moles that say "Hey! You should get me checked out! Now!", but the reality is that melanoma really speaks to you in the back of your mind. "Nah, that's just a little spot. Don't overreact. Doctors' visits are expensive. Why are you making such a big deal?" and all the while it's digging deeper and deeper into your flesh, in a place you can't see. It's a pretty nasty little beast, actually. Tricky.

Also, it's not so easy to find out if you "caught it early". Sure, some melanomas are what's called "in situ", which means they are just sitting nicely on top of your skin, but you've gotta be pretty quick to catch one of those before it takes root. If your melanoma has taken root at all, you're going to need surgery, and it's not going to be pretty. Yes, if you're in this boat, melanoma might not kill you...but it's going to take a chunk of your flesh, leaving you with a pretty messy scar.

In my case, it APPEARS that we've "caught it early". The doctors hold out very strong hope that this beast hasn't invaded my lymph nodes or other organs, but we won't know until they've had a look-see at those nodes.  So, here's what "catching it early" means in my own individual case:

1. A probable 8 inch incision that by all accounts will look like a shark bite, stretching from my thigh to below my knee. This is where the doctor will scoop out the spot where the melanoma used to be, and will cut out an additional 2cm of flesh in all directions, making sure (or trying to make sure) that the remaining flesh is free of cancer. Goodbye bathing suits! Goodbye shorts! Goodbye cute skirts! Well, if I'm being honest, I've never been a fan of bathing suits and the sun, but goodbye (and good riddance!) anyway, bathing suits!

2. A 4-6 inch incision in my groin where the good doctor will remove one or more nodes to determine if they've been invaded by melanoma. If not, good! If so, that will mean we didn't "catch it early" and I'll enter an entirely different ballgame. Still, you can't tell just by looking at the tiny mole on my thigh...you have to dig deep to find out.

3. A skin graft donor site. If the doctors can't close that 8 inch incision, they're going to need a skin graft, and the skin graft will have to come from somewhere.  Maybe my thigh, or my hip...I won't know until June 7th when I meet the plastic surgery and he can decide for himself.

In my case, "catching it early" means two, maybe three surgical sites and a potentially hellish recovery. I'm ready for what's ahead, but it won't be a walk in the park, and it doesn't seem reasonable for the removal of what really was a tiny little spot.

Don't underestimate this beast!

What can you do?

-You can see your dermatologist. You can point out any spots you think look a little weird, and you can let that dermatologist have a look at your skin and see if there are any spots the two of you should keep an eye on together.

-Use your sunscreen! I have research that I still need to do about sunscreen, but I can tell you that before this melanoma scare, I wasn't using enough of it.  It takes a whole shot glass full of sunscreen to do the job. At least!

Here's a video that might help convince you about the dangers of melanoma.  It made me cry, but I guess that may be a reflection of what I'm going through right now. I chose the one with French subtitles, because I'm a French teacher and I think the subtitles make it better...but that's how I am.

It was just a little spot...

I have decided to go ahead and start a blog, because that's what many people do when they receive a cancer diagnosis, right? I am hopeful that this blog will help me process some of the things that are coming my way, and might help some other newly diagnosed melanoma patients / warriors / survivors (when am I EVER going to feel comfortable with these terms?!) get the information they need as they begin their journeys.

First of all, this melanoma is one of the strangest things that has ever happened to me. I still just can't believe it's real and happening to me. I guess that's a normal reaction to learning that your life has changed, but it surely is uncomfortable. At this point, I feel like I've read the entire internet (seriously!) and it seems that most people feel more comfortable with their situation after a year has passed.  Let's get that year started then!

I have spent quite a bit of time reading melanoma blogs. If someone has posted a picture of their incision / stitches / skin graft / recovery...I've seen it.  I feel like I could perform my own surgery at this point, that's how much I've read.

Let me start by showing you what my "spot" looked like at the beginning of this whole process.

See? It's tiny. This spot is located on my inner thigh, just above my knee.  Even posting this rather inconsequential photograph makes me realize I'm going to have to work on some issues with being self-conscious about pictures of my body parts.  Ha! The next pictures are going to be really different, aren't they?

I had shown this spot to my doctor at my annual appointment last year, but I FAILED to say the words "It's new."  I just said, "Will you look at this spot?"  Why didn't I didn't point out that it was new? Why?! I have beaten myself up pretty significantly about that fact over the past month and I guess I'm just going to have to let myself be.  He looked at it and said, "I think that looks fine."  At this year's appointment, I said "Can you please take this off...I'm concerned about it."  He did not argue. I knew I was in trouble when he said "Well, maybe this isn't a melanoma.  Let's hope it's not."  He normally tells me when he believes something is fine, but this time he didn't.  I knew that was bad.

Sure enough, I got "The Call" one week later.  By that time I had done my research, because I knew in my heart it was melanoma.  In that respect, I'm grateful for my doctor's choice to say "maybe it's not a melanoma" instead of sugar-coating it.  I had done my homework, and I knew everything I might hear in that call. That made it possible for me to take the call calmly and really hear the words my doctor said. These are the highlights:

-Breslow depth .96 mm means I'm shy of that all important 1mm cut-off, but the doctors are going to behave as if it was a 1mm lesion
-Clark's level IV, but Clark's level doesn't mean much anymore
-Mitotic rate 2
-Superficial Spreading Melanoma
-Referred to the Loyola Medical Center
-If my dermatologist had a family member with melanoma, he'd choose this surgeon
-My current stage is 1B based on depth and mitotic rate.
-I'll need a sentinal node biopsy, which will help determine if I move to stage 3
-My prognosis is very good

Prognosis? Did you say prognosis? Oncologist? Surgery? Wait...prognosis?  But this was only a tiny spot...

For those of you who have just been diagnosed, I know you have questions about timeline.  I had my biopsy on June 3rd, I received the results on June 10th, I met with the surgical oncologist on June 24th, and I will have surgery on July 10th.  Results to surgery will be exactly one month.

More about those details later.