Friday, July 11, 2014

The New Girls Will Have to Wait

Sometimes the difference between what we think we're getting and what we actually get feels a little like this.
Just thought I'd share the latest update about my situation and "the girls."  I'm sure many of you are probably thinking I had my expander surgery yesterday, which was to be the start of the reconstruction process.  (Spoiler alert: I didn't have the surgery).  You know what they say about the best laid plans...

Long story short, my recent PET scan showed an area that lit up under my right armpit that looked like a lymph node to the docs.  They biopsied it and it came back benign (fatty necrosis).  Great news, but the conventional docs were still concerned about the possibility it could be malignant because of the way it lit up on the PET.  They offered a few options, noting that they wouldn't be surprised if it wasn't cancerous:

1. Surgery to remove the node.  Unfortunately, because of how deep the node is, proximity to a major artery and scar tissue from the previous surgeries and infection, this came with a number of serious potential complications and risks, including possible lymphodema, loss of feeling and/or function in that arm, etc.  The cancer surgeon went all super-scary-in-my-face to make it extremely clear she wasn't a fan of this option and really would rather not do the surgery (let's just say she wasn't winning any awards for bedside manner). 

2.  Chemo and radiation to see whether it is in fact cancer (if it shrinks, it's cancer; if it doesn't, it's not).    

3.  Wait a few months and take another PET scan to see what happens.

After consulting with my other doctors, including Dr. Perez in Mexico and the amazing Dr. Isam Nemeh - who I saw recently (incredible, but another story for another day) -  it became clear to us that it's very feasible for the PET to light up because of fatty necrosis or a lymph node enlarged due to either the infection or the strong activity of my immune system resulting from my therapies and supplements.  Dr. Perez also noted that the PET showed that my thymus - an immune organ - is active, providing further evidence that the protocols are working.  Additionally, my tumor markers and all are just fine, and while markers themselves are not 100% predictive of the presence of disease, it is reassuring to know mine are all at the baseline level.

So, after much discussion and soul-searching, I feel my best option is to wait three months and do another PET.  In my gut, I just know I'm healthy and cancer free and the first two options have far too many long term risks and complications for me to be comfortable pursuing them at this point.

My taking the wait-and-see approach also led me to hold off on getting the expander placed, as additional surgery could muddy the waters on the upcoming PET.  Given the additional trauma to that area and corresponding increased immune activity, scarring, etc, the lymph node might still have to work hard (i.e. be enlarged) and thereby light up again on the PET.  It also could even be joined by others for the same reason.

So I will continue to hold off on the reconstruction process until we have more clear answers on this little bump in the road.  I'm bummed that it will have to wait indefinitely, but the upside is I'll get to enjoy more of my summer.  

Overall, I'm feeling very confident in my ability to stay positive over the next three months, though I of course appreciate any prayers you happen to send my way reinforcing the fact that this isn't cancer.  And if you want to specifically request that area chill out/shrink even further so it can, you know, not light up the PET scan next time, that would be great as well!

At some point yet this year, I'll go back to Angeles Hospital for another round of autologous cell vaccine therapy, though the timing is yet to be determined.  This time it will likely be a shorter visit, though, which is nice.  And if I don't go back in the near term, I may do some additional high dose vitamin C IV's through my doctor here, which, in addition to being proven effective in fighting cancer, is great for clearing infection in case that's a factor.

So that's the latest of my drama.  The control freak in me is really getting a run for her money with all of these twists and turns, but I'm trying my best to roll with the changes to my plan as they occur.