Hi!! Ok, so Neil and I did not completely fall of the face of the earth, as it may have seemed. We have just been SO busy! I do apoligize for not being able to keep the updates…well updated and please do forgive me for any emails, texts or phone calls I may not have returned. I promise there has not been a spare second in the last few weeks and I will explain all that in a second, but please know that I have read every email, every text, every card and listened to every message and that they all mean so much to me. I even carry some of the cards and inspirational sayings/verses with me that people have sent and I look at when I want to get inspired and smile a little more and to remind me of all of your support. So please, please do not take our silence as anything other than what it is…we have not had a spare second and here’s why…
I want to start by making a very special and exciting announcement…. I have officially taken a new job! More accurately though, I have actually started my own company. I am now the founder and CEO of “Save My Hiney, Inc.” Never heard of it? Well, you will. :) So as you can imagine with any new job or start up it has been extremely busy and we have been working tirelessly at hiring only the best to be on our team. We have experienced some growing pains and logged endless hours of research and meetings and blown up a few fax machines, but have finally assembled what we think is a winning team.
But let me back up a little and get everyone back up to speed since our last “visit”. We did go down to the beach for the 4th and what began as a relaxing getaway, quickly turned into a barrage of phone calls, new consultations, re-obtaining of slides and tumor block for rereading and confirmation of diagnosis, etc. As one call from Sloan Kettering came in, MD Anderson would call in at the same time, and so the games began. It basically came down to who had the quickest appointment and a specialist in this particular cancer. So, MD Anderson was named the winner because it has both. Travel arrangements were made, medical records sent, tumor block and slides requested and sent, Radiology films requested and sent, and on and on. So, overnight, our lives got much busier in a big way and “Save My Hiney, Inc” swung into high gear.
How did all of this come about, you may ask? Well, great question. I have been working with a wonderful clinical nutritionist who has a Phd and only works with cancer patients. She has been a HUGE help and even with a undergraduate degree in nutrition myself, I am in awe of her knowledge and research. If this women told me to go outside and eat bark (organic of course) off a tree, I would do it and I would do it with a smile! My quad venti nonfat ice lattes are a distant memory, along with wine, fat free anything, microwaving in general, etc. I ate really healthy before but we are now talking juicing and blending things I would never have even considered a meal prior to this. For a quick example: Breakfast this am was a “Smoothie” made with cucumber, avocado, spinach, apple, coconut water, stevia, whey protein powder and a little ice mixed in…a beautiful green wonder I drank on the way to chemo…yummy! Needless to say, it has been quite the learning experience and man, does it take a lot of time! I feel like I am back in school in so many ways! I will get a system down, but right now it’s a little slow going.
So anyways, in working with this nutritionist and some discussion after a few of my questions she put me in touch with a Patient Advocate up in New York City. That is where the top was blown off. He is amazing and so, so kind!!! I sincerely don’t know how you can navigate a cancer like this without a specialist like him. And that is even after all of Marisa’s work in the beginning! Neil and I had a 2 1/2 phone consultation while we were still at the beach during which he went over, in detail, all the information and possible treatment courses that are out there for me/us. No stone was left unturned and no medical approach or style is off limits. We discussed the current plan, general protocols elsewhere, clinical trials, off label drugs, alternative medicine doctors, flying to Germany for a dendritic cell vaccine, etc, etc. Fancy stuff!
So that prompted Neil and I to take the little road-trip (OK, air-trip) to visit the nice folks in Houston, TX at a leading cancer center. So, as I said before, plans and “stuff” were arranged that makes running a small country seem easy and it was decided that we would take their earliest appointment that happen to fall on the day before my next round of chemo was to start…today. So after a prior week of re-imaging and staging scans (to see how the chemo is working) and follow up appointments with all of my doctors, we assembled all our “stuff” and headed out Monday night for some morning appointments cross country, hoping to fly back that night so I could make it to chemo the next morning back here…no pressure.
Anyways, center was, as you can imagine, a very impressive facility and of course is enormous. Everyone was extremely nice and the buildings have wonderful big, bright, open spaces that are inspiring and well decorated. So all was great until the actual consultation… after 4 hours of waiting. You see, there is a specialist there that actually wrote a paper specifically on Neuroendocrine Cancer of the Cervix and is the only expert we could find on this and is specifically why we went to this cancer center in the first place. The doctor is retiring, so we were assigned to one of his assistant professors/surgeons that will be taking over his cases, but were assured that he would also attend the consult to address our questions and give us his opinion. This was especially important given our time constraints of both chemo the following day in Atlanta and a flight out that night. Well, that never happened. We met with his assistant and the short of it is that she said they’d reviewed and re-tested the slides and stains from the cervical and liver lesions and could confirm Emory’s original diagnosis…thanks. Then we went over the “general info” about this disease…”very bad cancer, extremely rare of even the extremely rare, historically bad outcomes, nobody knows, nobody knows, nobody knows….” All I heard was “Blah, blah, blah, blah, blah,…Oh, and nobody knows.” Well, tell me something I don’t already know sister! Basically they had nothing new to offer and the specialist for reasons we still don’t quite understand was not allowed to attend the meeting.
So needless to say, we left frustrated, missed our scheduled flight back and we left them with more info than they gave us and in turn they left us with more questions than we came with. So anyways, I tell you all that not to hash through a play by play but to let everyone know why we may have seemed to have fallen off the map recently.
So all the above just motivate me to work harder on the things I CAN control…my mind and my heart. I didn’t need to fly out to Houston to figure that out! But at least we know and we got the second opinion of the #1 Cervical Cancer Center in the US. Does that mean we don’t have options, absolutely not. We have a great team of people who are willing to do whatever it takes to get me well and will pull out all the stops to get there. Plus, the people out at MD Anderson obviously don’t know me :). I’m bringing my “A” game and anyone who is working on my team and employed by “Save My Hiney, Inc” is expected to do the same. So here we go…the plan right now is 2 more cycles of my current regular high dose chemo followed by another re-staging scan and hopefully full remission of the liver lesions (definite improvement on the scan last Monday) and if so, proceed with a mega dose of chemo with stem cell rescue (they give my stem cells back because they wipe them out due to the mega chemo) with about 2-3 months in between and then repeat. Sounds like a cooking recipe, huh? Well, it seems to be my cocktail for getting this “nobody knows” crap out of me once and for all. This would all be done here in the Northside Hospital area…actually the new Tower for those of you who know the area and is an outpatient procedure so I can be in my own home. I think I must be the luckiest girl in the whole world to have my best treatment options in my backyard.
So enough of the medical crap! Man, that stuff gets old in a big hurry and is probably why I don’t hash it out more often. It really is just a small part of all of this. As I’ve said before, when something like this happens to you, it just flattens the box you didn’t know you were living in while also blowing off the top and dropping out the bottom too. But when the dust settles…there’s beauty in the brokenness. So when I to the medical “crap”, I don’t mean it’s not necessary or that I would ever not do it, but it’s just one piece of this. I’m starting to see that the lessons I’m learning about myself, the amazing people I’m surrounded by and all the love and support I’ve been shown are what it’s really about.
And I gotta tell you, I’m happy. I mean really happy. Is it scary? Sure. Is it humbling? Oh yeah! Is it beautiful too? Absolutely. There is no real way for me to truly explain this in a way that I could convey the feeling and effect, but as anyone that has gone through something like this knows and many of you can imagine, you are never, ever the same…and I am so,so grateful for that. I’m not asleep behind the wheel of my life anymore. I see people all the time that look like they would rather be anywhere or anyone else than where or who they are. And yet I stand confronting, I think it’s safe to say, everyones greatest fear…the unknown. But you know what, as I look, and I mean really look at my life, mortality, spiritually, God…I see only beauty and goodness everywhere. So at a time in most of our lives the 30’s are all about really hitting your stride and planning for a big bright future…career, marriage, starting a family. Cancer is not even on the radar, not even an option. And then, suddenly one day it is. So where do you go from there? Forward. You go forward and wake up to your life. Do you know that it took me 31 years and this to realize that I “write” in my head ALL the time? I know, who knew! It is especially strong when I am running (which I am back up to 3-4 miles a day and added weights and abs back in…no excuses people!) and when I lay down to go to sleep. I always wondered why I always laid there for like an hour before I finally fell asleep and everyone else seemed to just shut their eyes and were out. Interesting. But see there was no space for that before. I was too busy racing through my life and collapsing in a heap at the end of the day to even notice. This has made space for that and so much more. My heart and mind are wide open and it feels amazing. Let’s see where it takes me…I have a few ideas of my own and getting on the other side of this is only the first step. I mean, I’m already a business owner now and who would have thought that! :)
Love to you all,
Oh, I posted some new pictures…take a look! :)Tweet