Thursday, September 11, 2014

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.

Tuesday, September 2, 2014

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.

Friday, August 8, 2014

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! 

Friday, August 1, 2014


 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.)


Wednesday, July 30, 2014

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.

Friday, July 25, 2014

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?

Monday, July 21, 2014

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!