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...

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..