Decisions

Let's start with some fun news. I have been asked to video two virtual speeches for upcoming melanoma awareness events! The first is IMPACT Melanoma. This is the organization that I spoke at their gala last fall, and they asked me to send an update on how things have been. The second is for my dear friend Tracy's organization called Polka Dot Mama. I was supposed to be their keynote speaker at their gala last April...but of course that didn't happen (thanks 'Rona). So they have invited me to do a video message for their virtual gala they are planning now. I put links to both of these awesome groups at the bottom if you want to learn more about them. They are all about melanoma prevention and early detection. So my PSA for the day is to tell you to BOOK YOUR DERM APPOINTMENT! If you have put it off due to covid, now is the time to get back on track.

Now the rest...I haven't updated lately, because we have hit a couple bumps in the road on this journey. We found out a couple weeks ago that this most recent tumor was not BRAF positive, like the cancer I had in 2018. This means that targeted therapy (option 2 on my last post), would no longer be an option. Apparently, this is EXTREMELY rare and literally just doesn't happen, cancer does not mutate and change this way. So we needed to find out if there was a lab error. If it is not an error, then we need to confirm that this in fact is a whole NEW cancer, different from what I had in 2018. Of course, they are still both melanoma, but I guess there are different types of melanoma that can be treated different ways.

Still with me? This is gets very scientific, I know My head feels like it's going to explode daily.

The next step was to have NIH do full exome sequencing on the tumor to confirm what the heck it is, and if it's the same as what I had before. The sequencing takes weeks to be done, so that is why we have been waiting so long. If it's the same, that means it has metastasized and spread thru the blood stream to a new area of my body. It it's different, then they think this is a brand new cancer, and the tumor used to be a lymph node that was "taken over" by the cancer. Whichever one it is though, the bottom line is that the year of immunotherapy that I finished in 2019 was not effective longterm...and that ain't good.

We finally got an update yesterday, and they said the first run of sequencing was unable to be interpreted. You have got to kidding me! They said they should have a 2nd reading by the end of this week. However, they were able to confirm that it is in fact BRAF negative...so there was no lab error on that part. This is not good news. I was really prepared for targeted therapy. I was okay with a few months of feeling cruddy, and then moving right along with life. My oncologist told me yesterday that I need to start mentally preparing for combo immunotherapy (which was option #1 on my last post...the one that I said wasn't even ON THE DANG TABLE!). Needless to say this is not what I wanted to hear, and I haven't agreed to it yet. I still could do the "wait and watch" option, but that's probably not what they are going to recommend. A lot of thinking and praying needs to happen. :(

So these are the next steps. I have a pet scan next Tuesday. It's already been 2 months since the last one, so need to confirm nothing has popped up the last few months. Then meeting to go over all results (pet scan & sequencing) on Wednesday. Then I think it will FINALLY be decision time. I know this process of waiting and not knowing would drive most people crazy, however, the habitual procrastinator in me has been just fine with putting off decisions and pretending like nothing is going on. :) The past few weeks this "situation" has been moved to about number 3 or 4 on the "list of things to worry about". LOL...virtual school, covid and the dang election have it beat right now. I'm okay though...just taking things one day at a time. Just a few random meltdowns here and there that Jerome has to talk me down from...he's good at that, thank goodness he doesn't have anything going on in his life stressful right now. HA!! So say a prayer for us both please, and pray that I can make the right choice. Thank you!!!!

I will update again next week if we make any decisions. Stay healthy & safe all!

XOXO,

Lacey

P.S. I just figured out I could add GIF's to these entries...so things might be a little more entertaining from here on out!

IMPACT Melanoma: https://impactmelanoma.org/

Polka Dot Mama: https://polkadotmama.org/