I'm so sorry I have not posted in more than two weeks! I have been taking some time for myself to get ready for this next chapter. Shortly after I got the biopsy results back, I called my doctor and pushed our appointments back a week. Then, I hopped a Southwest flight and went to the beach with Mommy. Sun, wine, board games (my favorite is Catchphrase in case you're curious) and lots and lots of good conversations. Just what the doctor ordered.
I felt badly leaving the Big Man behind but I think he enjoyed a few days of pizza and All-You-Can- Eat Wing nights with his friends.
When I returned, the Big Man and I joined some of my co-workers for an amazing night at Fenway Park. I was selected as the Red Sox Honorary Bat Girl when they honored breast cancer survivors on Mother's Day. We got to go on the field for batting practice. A bunch of the players signed a jersey that they gave me that had Bat Girl on the back. Yes, that's me with David Ortiz!!! Now I have both the Big Man and Big Papi in my corner in this fight!
It was a great day and I went on Monday to my doctor's appointments with a smile on my face, relaxed and ready to take on whatever was coming my way.
Turns out, I was not at all prepared for Monday. Monday became perhaps one of the most overwhelming days of my life. First off, the day started with a call from Sears Home Delivery, never a good way to start the day. They told me that the dryer I had ordered a month ago with my tax rebate wasn't going to be delivered as planned. The brilliant people at Sears did, however, deliver my washer and haul away my old appliance. I wanted them to hold off on delivering the washer until they could deliver the dryer, but that's just too difficult for them. They could either deliver the washer Monday or deliver the washer in June. So I either have a washer sitting in my living room for a week as I wait for the dryer, or I have a dryer sitting in my living room for a month. I chose the week.
And then, I went to see my oncologist to discuss keeping me alive for as long as possible. Is there something wrong with this picture here? Who am I and how did I end up with this life? For most people, the Sears interaction would have sufficed for a bad day....
But I digress, usually my appointments with my doctor take about 15 minutes. I allow an hour with time in the waiting room. This past Monday, Mommy, Big Man, and I spent almost three hours at the hospital. We were all so exhausted we couldn't even discuss the huge changes that were in store afterward.
I now realize that I was not prepared for how my life would change with this latest diagnosis. Five recurrences apparently puts you in a more....urgent...section of the patient population. I had my doctor's full and undivided attention but the overwhelming theme of the meeting was "There is no blueprint for how to treat you. We are going to do our best. We are going to have to change course a few times, but let's do our best."
I don't think I own a pair of pants that were big enough for the meeting on Monday. I was completely unprepared for the chaos that was about to ensue. Now that I have this liver spot, the options available to me change drastically. There are several standard therapies (aka therapies approved by the FDA) that we could use, but the doctor told us those standard therapies are not nearly as promising as what is available on clinical trials. The clinical trial drugs may be promising, but I really become a guinea pig and will spend most of my life at hospitals getting poked and prodded, and monitored and tested. Getting the standard therapy makes it easier to maintain a normal life, but (and that's a big but) the doctors believe the cancer is more likely to "present itself" again in a shorter time on standard therapy than on a trial.
See that sentence right there, that right there is what it means to not have a cure. I am putting on the biggest Big Girl Pants I own. I am gathering up all of my bravery and strength. I am giving up most of my life and my health all to gain a few wonderful, joyous, quiet, unmolested years with my hubby. But I am not doing these things and then closing that door. I am losing my health and my free time. I am being poked and prodded, and then I have to get back on the horse again when the cancer "presents itself". Are we tired yet?
So, we decided to go with a clinical trial. That was when the real chaos ensued. Applying for a seat on a clinical trial is a lot like applying to college. At first there were no "seats" open and we were going to have to wait a month or more to start a new regimen. Then, in the middle of our appointment, my doctor's pager started blowing up and the phone started ringing. Long story short, in about 2 hours we had changed plans and trials about 5 times. We actually left the office a couple of times, but the doctor ran after me with another 10 sheets of paper about another clinical trial that looked more promising. It was insanity. But good insanity I guess.
The decisions we were making were so tough, though. That's what was most overwhelming. I was choosing between:
hair loss and nausea
Four drugs or five
3 days a week at the hospital twice a month or five days at the hospital once a month.
Just really really tough choices with no clear winner. How do you choose? It's like a real life, high stakes game of "Would You Rather?"
Now that I have secured a seat in a trial that I "like", I have to begin all of the red tape with insurance companies and all of the preliminary testing that is required for the trial. I have spent every day this week at the hospital for at least a few hours. I am going back this afternoon after work for a brain scan, and when I'm not at the hospital, someone from the hospital is calling.
My trial is looking at two drugs, that have been shown over the past few years to offer patients significant time without disease progression individually. No one has ever taken the two drugs together. (TDM-1 and GDC-0941). The TDM-1 is particularly exciting. I have been on Herceptin for five years now and it has controlled my cancer well, but now it is clear with all of the recurrences that the Herceptin is no longer working. TDM-1 is a drug that contains both Herceptin and an incredibly powerful chemotherapy agent. The Herceptin locks onto my cancer and then the chemo goes to work killing it. This is a new type of Herceptin that my cancer has never seen before so it won't be resistant to it. We think it should work well. TDM-1 is given every 2 weeks by IV like chemo, the other GDC-0941 is an oral chemotherapy that I take at home most days.
The trial is a Phase 1 clinical trial which means they want to monitor me at the hospital a lot to see how much of each drug I can physically handle before the side effects get to be unbearable. FUN STUFF!
So, while these drugs are exciting and may offer me a few years of quiet, I am embarking on a treatment plan that will be leaving me sick. The trial, in it's design, is meant to make me sick.
Also, since this is a clinical trial and they have to record every tiny change in my blood or side effects, I have to go to the hospital three days a week for anywhere from 4-10hours. This schedule for the next few months makes working full time complicated, but my job is my life. I get so much joy from my job. I can not bear the thought of being sick as my full time job.
If I am going to fight this beast for decades to come, I need to keep the cancer in a box wayyyy over in the far corner of the living room that is my life. I also can't imagine dragging the Big Man away from his job and his much-loved tennis to be with me for hours and hours in fluorescent lighting around 80 year olds who are coughing. No, no and no!
I am hoping that I can kind of arrange my appointments for insanely early in the morning and then late in the day, so in the middle of the day I can be normal. I am also hoping the side effects don't keep me from driving myself to the hospital. I am not going to be a little Driving Miss Daisy. I don't want to be chauffered around. I want to be 26 and hop in my Jetta and put on my sunglasses and open the sunroof and pop in some Lady GaGa and drive my own darn self to the hospital! I then want to have the energy to go to the grocery store on the way home.
Are you all realizing yet that I may be slightly too optimistic?
But you know, you can't put a price on independence. Those small moments that so many take for granted, those make my world go round.
For now, I am still extremely overwhelmed. I will be overwhelmed until I get this new schedule under my belt. So please, I apologize if I fall off the face of the earth, but I'm just trying to hold my head above water. Love to all of you!