Hi Everyone! We have come back down to earth and back to Atlanta since the our last “chat”. We promptly jumped ship, pardon the pun, and went down to the the beach for Labor Day and to celebrate our good news. I want to thank everyone for your amazing response and it’s my hope that you will accept this as my reply to any calls, texts, emails, etc that I was not able to return. I can’t begin to tell you how humbling it is to have people tell you that the news of our great results brought them to tears or to see such an outpouring of support on our behalf. We are so, so blessed to have such wonderful friends and so much kindness shown to us. It gives me great courage and strength to know that you all are out there rooting for us and sending lots of prayers and happy thoughts our way. This has been quite the little roller coaster ride and I want to thank you all for coming along with us.
Alright, I am going to dive right into the million dollar question many of you have asked and I’m sure others have wondered. ”If you’re in remission, why do you have to do the high dose chemo/stem cell rescue?” Well, let me start by saying, great question and I’m with ya!! You see, the wonderful news of my scan was fairly short lived for me if I’m totally honest. Not because anything changed or that I was any less grateful, but the reality of what I was about to face quickly came to the forefront. With the scan as a green light to move forward, what was always “out there” was now suddenly here. My focus the entire time has been “Eye On the Prize” and everything has happened so fast that I have just focused on the task at hand at each turn. Surgery, check. Chemo, check. Shave head, check. Reinvent yourself, check. Face your own mortality, check. Remission, check. Knock out your immune system, pump mega doses of toxic drugs into your body with no assurance of success and over 6 months of house arrest….ummmmm, WHAT??!! Who slid that in there?! Suddenly I was on the brink of this major shift and it occurred to me that for the first time in this whole thing I was actually in a position to make a choice. I’ve felt so good about everything that has happened so far, but I’ve also learned a lot on my “healing adventure” and I truly believe that the body wants to heal itself so it bothered me that a big part of this next treatment involves wiping my entire immune system, my body’s healing center, out not just once but twice. So there I was with quite the dilemma and at a crossroads with little to no solid data to basis my decision on. Do I go for the really aggressive “newer” medical option with more risks or do I continue on a the current “safe” path that has been the traditional protocol but has had only “poor outcomes”?
I had promised myself that I would sit down and read over the consent and information for the high dose treatment while we were away since we were now past the scan and about to start the work up for the next phase when we got back. Prior to this I hadn’t really wanted to know a lot of the details of the treatments as not to get those expectations in my head but I knew with this, lack of information could potentially be very dangerous, so I conceded. Well, that’s when it, or rather I, began to unravel. As I read over the risks…”possible permanent brain damage including learning disabilities, loss of ability to care for yourself, organ(s) failure, risk of other cancers later in life, death, etc” Huh?!…..And the benefits? “Unknown”. Hummm, really? “Oh yeah, and we’re going to do it twice”…Well gosh, where do I sign up? ….ARE YOU KIDDING?! And that was just page one! Anyways, I think you can see why I started to hyperventilate. OK, I didn’t actually do that, but it did rattle me a bit.
So the deal is, there just isn’t much information on this type of cancer (actually there are less than 30 cases ever documented…lovely!), but what we do know is that we are ahead of the game now and that we need to keep it that way. The PET scan is limited in that it can only show where any active cells have grouped together, but it cannot show where other possible free floating cells called micro mets are potentially located. So with “remission” or “no presence of disease” on the last scan, we know that the prior lesions or groupings are gone/dead, but we also know that this type of cancer has a high reoccurrence rate because of these micro mets and therefor the high dose theory is that you have to hit it hard and then hit it hard again while it is down to blast it out of there for good. But essentially it is still just a theory with only a small amount of numbers and data to back it up, but really the best shot we have. Ha, leave it to me to get the weird one that is the 0.00001%, right?! I think that’s what they call “Short Bus Special”.
So back to decision time. As the days past and we got closer to my “Day of Testing” that would included bone marrow biopsies, an ECHO (ultrasound of the heart), labs, EKG, head CT, etc I was trying to feel good about moving forward. I knew that I needed to be 300% on board if I was going to proceed. Those of you who know me well know if I’m on board with something then “game on”. And as much as I have mellowed in other areas, I have used this drive to my advantage during all this and knew that it would carry me through if only I could be sure that this was the next right move. So I tried to step out of the fear as far as I could to look at it from all angles and not let the stakes of this decision drowned out what my heart was telling me or where the newer medical data was leading us. So I dug deep, spoke with our Medical Consultant and looked at everything again, and it became very clear that this was by far the next best step. And just like that, I was 300% on board. Something shifted in me and I knew with absolute certainty that this was the path that would lead to the “Grand Slam” we need. I was always OK with the duration of the treatment and even the risk of possible side effects if I knew that it felt right to me. It’s funny how sometimes it’s easier just to stay on a known course, even if it’s not a great one, just because it’s a known quantity. I have been grateful to have to push through those plateaus along the way and not linger too long when I needed to be moving forward.
So with a kick in my step I showed up last Monday for my bone marrow biopsies with Neil and it’s a comical story in and of itself. To make an already long story short, they sedate you for the procedure so that you basically don’t care that they are putting a very big large bore needle in the back of each hip and drilling down to get out the marrow. But what they don’t tell you is that the drugs they give you is really truth serum. So there we are and I’m singing like a canary. 45+ minutes after the procedure, I’m still rambling on while the nurses are trying to usher us out as we still had a full day of other tests to go. Those poor girls didn’t know what they were in for! I have officially lost all pride and my ego was tossed out the window a ways back. God love Neil, he just sat there and listened to me and pretended I was making some sense. Now that is love! ;) I’m telling you, we are a laugh a minute over here.
Well, I will wrap up this edition of War and Peace by bragging on you guys a little bit. We apparently have one of the largest groups on this website and they contacted me directly to approve more space for members and also to ask if I would do some local PR for them. So today there is an article in one of the little local papers on all of us. Kudos to all of you! You guys are making us look good! :) Also, I posted a recent photo of me with my wonderful Gyn/Onc, Dr. Gerald Feuer, who did my robotic hysterectomy and has managed my care up to this point. He is, not only a excellent surgeon, but a wonderful and caring human being and was just written up Sunday in the Marietta Daily Journal as being a “World Leader in Robotic Surgery”. Pretty fancy to have in your own backyard, only have 5 dash marks on my tummy, be up and walking that same night after a radical hysterectomy and be able to start the first round of chemo the following week. Gotta love technology!
Wow, I may have burned up your email, blackberry, etc if that is possible but will quickly tell you what this “next phase” looks like as many of you have asked. Next Wednesday they will put in another catheter in my chest and I will start the “light chemo” for the mobilization and harvest of my stem cells the following day. That along with some growth factors can take up to 10 days or so and then will do the harvest and look to begin the actual high dose chemo in the hospital over about 4-5 days around the second week in October followed by the stem cell transplant and then daily visits to their office for blood work, platelets, fluids, etc for 30-50 days, a break in between and then do it again minus the harvest (they will take enough for both treatments the first time). That’s the Cliff Note version anyways. “Team Phillips” (my mom, Neil’s mom, Neil and me) had a whole “Day of Education” with the High Dose group today and we are busy getting geared up for it. GAME ON!!
Sending you all much love and, as always, so much gratitude,