Life Changes

You are in your prime years.  You have a wonderful family, friends and life is good.  Everyone is healthy and happy.  

Then suddenly one day, you get a phone call.  "I'm sorry, but your test came back, and you have cancer.  You are lucky though, because it was caught early, but you do have to have one more surgery because they cannot rule out a tumorous spread"  You are crushed.  

You have the surgery, you recover and are left with a scar from the incision, but the news is good.  They got the entire tumor this time.  You don't need any further treatment, but you will have to have scans every 3 months for a few years, then every 6 months for a few years, then after 5 years, the screenings are just yearly.  

This is commonly known as remission or cancer free.  There's one problem though.  Your cancer was melanoma.  It is different.  With melanoma, even if they remove the entire tumor, you are not cancer free.  That's because just once rogue cell can get into your bloodstream and one day, with no warning, decide to grow with fury again.  That one potential cell keeps you from being cancer free.  You don't know if or when it will ever return.  You pray it won't, but the possibility never leaves your mind.

Your friends and family don't understand.  They think you had it cut out, so you are okay.   You find yourself constantly trying to educate them.  They just don't want to get it.  They make jokes about tans and paleness.  They tell you they respect you, as they check in at the tanning salon.  They tell you that you are being too sensitive, as you struggle about whether or not to react to their jokes.  They tell you that they have had precancerous spots removed, that they were told by their doctor that all damage to their skin was done in their youth.  You get very good at tuning out the comments. You are also good at thanking people for their compliments about you smelling like a beach. You learn to be very non-confrontational when you are tuning out a conversation someone you don't know is having, and your mutual friend asks you what your thoughts are.  You learn not to take the comments personally. You also learn that every conversation isn't the right conversation to be educating. You pray for the day that everyone gets it, not just out of respect for you and your experience, but also out of respect for themselves.  

Summer Camp

Summer is here!  School has been out a week and a half, and camps are starting.  

Tomorrow is also 4 years NED for me!

4 years ago, while my then 13 year old son was getting blistered at a youth retreat, I was having a wide excision on my bicep.  How far we have come since then.  He came home with a blister on his shoulder that covered the whole thing, and had scabbed over already because a girl had scratched him.  It was nasty and he was not comfortable at all.   Since then, he has resisted my message because "You know how many people get skin cancer, and are okay?"  I keep sharing, and last summer he was proud of how little tan he had.  He is olive skinned with dark hair, so the burn I mentioned was one of very few in his lifetime.

Yesterday my daughter returned from her first camp.  She was gone for two days and had an amazing time.  I had heard horror stories of kids coming back from this camp blistered each year.  So when I signed her up, I had a talk with the leader.  I told her "You know my history, and you see how fair she is, sunscreen is not an option to be avoided"  She agreed, assured me that there were plenty of counselors that would help, and that they were aware of how many more fair skinned kids they had this year.

So drop off comes along, and I was talking about how I had packed her bag in a way that she shouldn't be able to lose anything.  Another mom, the one who was there with me just last year when I got the call that I was going to have a wide excision on my scalp, says to me "Yeah, she will lose stuff, come home sunburned and exhausted"   Nope, I had talked to the appropriate people, drilled my already sunscreen aware daughter about how to make sure she has it, packed enough for her entire cabin...  Yet I couldn't get that statement out of my mind the whole time she was gone.

So as I am watching the kids get off the bus yesterday, I don't see any red faces, other than on the counselors.  Finally mine comes off.  She was slightly pink cheeked, but that was it.  After we got in the car, she told me, without me asking, that she had told them to put sunscreen on her every morning and that they listened, but in the afternoon when she asked for more, they had told her to wait.  She said she wore her rash guard with her swimsuit, and I have seen pictures of a couple of other kids that had them too, and she was glad that even though her face got too much sun, she didn't burn.

While I am not thrilled that they did not reapply, I am glad that she spoke up and asked for it, and that she used the rash guard.  Other than one evening thunderstorm the first night, it was very sunny this week, so to come home with pinkish cheeks that have already faded was huge in my mind.

Hello Again

Hello Stranger, It’s been a while.  I can’t really pinpoint why it has been so long. 

There have been many times over the past year that I have wanted to blog.  I am working almost 50 hrs a week, have a side business, my kids are now 7 & 17...  There just aren’t enough hours in the day sometimes.

I think I also put a lot of pressure on myself as far as the page and blog were concerned.  I started it with the purpose of sharing my story and experiences, but then I somehow pressured myself to find an additional direction that may not have been necessary.

Finally, I was very confused about a lot with my diagnosis.  Last May, when I was having a wide excision on my scalp for a dysplastic nevi that they could not rule out was in situ from the biopsy (it was ruled out with the WE), the doctor made a comment about my original melanoma being stage 1.  WHAT??  I had no idea and had never heard anything other than in situ.  So I talked to my dermatologist, I looked at my pathology.  I still wasn’t clear.  Basically, the best way I can comprehend it was that my original diagnosis was in situ, but they “couldn’t rule out tumorous spread”.  Well, when I got my results after that wide excision, the surgeon only told me that I had clear margins.   I always wondered why my in situ follow up program more resembled that of someone who was stage 1.  It’s very confusing to me.  I think I had to take some time away from sharing, although I do still on my personal facebook page, and in real life, to absorb that change. 

I’m thankful that my follow up has been more proactive in the past few years.  My last appointment was the first after graduating from the 3 month to the 6 month screening schedule.  I am still donating 2-3 moles at each check.  The last one, I had a heart shaped mole on my finger.  I have traded it for a cross looking scar.  I also had one on my leg that was removed.  It was dysplastic, but with clear margins.  I have been told to watch it for brown spots as it heals.  I go back in July or August for my next check.

So that is a quick update on where I have been and what’s been going on.  I have been feeling inspired to blog about experiences again, but felt an update was needed before diving back in.