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!


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