I just want everyone to know a few things that I now know, so that everyone knows that my positiveness comes not just from my seemingly unfailingly positive attitude but also from a place where miracles are actually just "the magic of science."
Also, I don't want all of you to go crazy googling things and emailing me crazy cures involving fermented mushrooms and stuff (not that I don't appreciate the thought but one of my blessings is the quality of my medical care)
I have made the decisions, and it's one I hope all of you will respect, to trust my doctors. They have done nothing but demonstrate to me that they know everything about cancer, and my cancer specifically, and that when I try to do research on my own, or when I ask the internet questions, I end up just doused in unnecessary, scary, false and negative energy. Such is the nature of medicine on the internet. So while I know the temptation is there to start googling "cure for metastatic breast cancer" or "incurable cancers treated" or "living with bone disease" or "what does stage 4 cancer mean" or whatever, and I know this comes from a place of love, I also want to make sure that you know that what you are finding is not going to be any better than what I got going on in real life over here. In fact, I might be one of those search results that give people hope someday, because despite how bad and scary this news is, my "prognosis" right now is nothing but good. Different, based on a relative scale where you have incurable cancer, but GOOD>
So here's the good news lovers (aka, 7 reasons why you don't need to start googling my medical diagnosis)
#1 My doctor is the chief of Oncology at Kaiser of San Francisco. He is fucking amazing. I do not swear but this needed to be emphasized in a big way. He is the doctor I would be fighting to get to be my doctor if he wasn't already my doctor. Not only does he have the most amazing energy of any human being I have ever met, but he is on the cutting edge of cancer treatment, in a city that is on the cutting edge of cancer treatment. If there is a treatment out there, he has heard about it, he knows the rate of effectiveness, and he has most likely already tried it on a patient (or supervised another doctor who has - he is the chief)
#2 The type of cancer I have (triple positive, her2neu overexpressed metastisized breast cancer) was literally just approved for an AMAZING new drug from genentech called pertuzamab. It is a partner drug to trutuzamab (herceptin) and has had something like an 81% effectiveness in reducing or completely eliminating lesions in patients like me. It will be part of my treatment plan (although we will know more once we get the results of the PET)
If I had done surgery before chemo (which, thank g-d I did not, because what a freaking waste, I would be SO PISSED right now if I had started prophylactic treatments on my breasts when it was already too late) then I would have actually been in a clinical trial for this drug, which is not yet approved for treating non-metastatic BC.
#3 There are currently no other clinical trials (either here or abroad) for any treatments for the kind of cancer I have (my guess - everyone worth working with has been working on the amazing pertuzamab) but should anything come up, I'm pretty sure my oncologist would among the first to hear about them
#4 There is nowhere better in the world to be located than where I am right now. The best stuff for treating and managing what I have now is coming from Stanford, UCSF, Genentech and the talent that is attracted to Bay Area. The Bay Area is on the bleeding edge of cancer treatments, especially metastatic cancer treatments.
#5 When it comes to metastatic cancer (and clearly this is a relative scale) there is no better scenario than what my current scans are showing I have now - early detection, limited just to bone disease. It is the most "healable" of all "uncurable" cancers. While by our current definitions of "cure" it does not "really go away" there are so many good treatments for it, with such amazing results, that once I find the right one, and with a little time, I will be "completely healed" even if it doesn't "really go away".
So, if you really want to feel useful (and you know who I am talking to right now, I'm not going to call you at but I am CALLING YOU OUT) you can spend all that time you would have spent googling treatments , and instead spend it praying with me that my PET scan won't show spots anywhere else (especially in my organs) Although if it does, we will just need to change our treatment plan again, and those spots will have been caught so so, ridiculously, luckily early that my treatment options for those also look really good.
#6 I have no pain right now. Well, I have a little pain, but actually not in the parts of my bones where the lesions actually are (so, prob from the chemo) and in my gut where the colitis is that brought me into the ER is located (and seriously, thank goodness for that pain, right?)
Because I am so dumb lucky, we got this CT scan before the lesions in my bones were even bad enough to manifest symptoms (typically how this thing is discovered) so now, instead of trying to battle down pain and all that bad stuff - I can just work on containing (and hopefully healing) what I have now, something much much easier to do than if these suckers had been further along or hurting me.
#7 If you must google - and I know some of you will do it anyways- then you should read this - the #1 search response for "living with metastatic bone disease" from WebMD. Here is my favorite part of this article:
"Much depends upon the type of cancer you have (a very treatable kind), how old you are (super young and healthy), and how much time has elapsed since you first were diagnosed (we caught it really, really early). "But many people can do really well for a long period of time," Fasano says.
Think of it like Diabetes lovers. If I take really really good care of myself, and I monitor my body vigilantly, and I find the right medicines to take everyday, than my life is going to as close to normal as anyone's life can be who has a chronic condition. I may even need to give up sugar (damn all of you who sent me those articles on sugar and cancer.)
love you all so so much