Friday, May 14, 2010

I'm Back and Ready to Roll! I think....

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!

13 comments:

Kristen Sager Cincotta said...

I'm fascinated about the new Herceptin drug that you're trying. Herceptin has been a major part of my mom's treatments over the years and we worry about the day that it "stops working". It's very reassuring that there are trials going on to discover the "next" Herceptin, since my mom will probably need it some day soon. Deciding to throw caution to the wind and signing up for a clinical trial is such a heroic thing to do and my whole family thanks you for it!

Thanks for sharing your story!
Kristen

Bridget said...

Kristen,

It is so wonderful to hear that my decision helps you and your family sleep at night. Trust me when I say, the trial isn't the only thing your mom has at her disposal. If that Herceptin ever "stops working" there is a whole arsenal of stuff available. Pills, IV, shots, you name it, she's got it. You can do this!

I am proud to carry this torch before your mother. I hope I never have to pass it along.

Thank you for reminding me why I do this.

Hugs,
Bridget

melissa said...

Never too optimistic! Bridget if there is anything I can do or send your way to make all of this more bearable you let me know.

It is your fantastic optimism that has gotten you this far don't stop now.

You are so beautiful and inspiring and you are healing people with your story and now your trials daily.

Know that you are loved BIG TIME!
Melissa

Jarrah said...

I agree with Melissa-you are LOVED big time! And when you get tired, (do you ever get tired??) we will all be here to cheer you on and help you out.
You are not alone in this-we are here with you.
Love,
Jarrah

Kinley's Mom said...

Bridget...I haven't met you, but I stumbled across your blog several weeks ago. Since then, you have become a hero to me. Thanks for taking on a clinic trial so that new treatments can be presented to future patients. You are amazing.

--Pamela

Shop Without Money Sisters said...

Bridget,
Your post just brought back so many familiar feelings...I was diagnosed at 32 when I was about 6 months pregnant...I remember the doctor's pager going off and phone ringing and being with my surgeon and my oncologist calling or setting a plan with my oncologist and walking in the door to hear the phone ringing from my OB, plans changed about 20 times in 2weeks...you just brought back a deja vu of feeling overwhelmed...I don't think I can quite compare to what you are going through right now but I feel for you. I've been thinking about you a lot since I came across your blog and praying for you. What you are doing is strong and brave and amazing. Seriously. Lots of people would just crawl into a hole, not share all this with the world...and even though I'm not where you are right now, I could be sometime. I know that my cancer could come back. And it helps to hear other people's stories. It helps to know there are other treatments and options and women fighting and making decisions and living it. I'm sorry you have to be the living example, I'm sure you'd rather be anything but...but know that what you are doing and how you are living your life with breast cancer and how you are dealing with it is making a difference in other people's lives. I know I am far away and I know you know nothing about me save for a blog comment or 2, but please...anything I can do to make this more bearable...I am here.
Heather
sigmasal@aol.com
1st time walker/5-year survivor/her2+ buddy

ghouser said...

I was forwarded your blog by my mother who is a cancer survivor and I am amazed by your story. You are such an great inspiration to everyone. You have soooo many people rooting for you and praying that everything will work out. Your positive attitude is so wonderful and I hope it helps get you through all of this. I wish you the best of luck on the journey you are about to embark on.

jillian said...

I'm not a cancer survivor or anything, but I love reading the honesty in your blog posts. I can't really relate to what you're experiencing, but trust me -- if you ever ask for support, whether it be a card or prayers or something more tangible or expensive - I will do my best to deliver. Let us know if we can do anything to help :)

Erica said...

Dear Bridget: Holding you in my heart as you adjust to all the new treatments. Want you to know that TDM1 is very promising. My close friend that I've spoken to you about often with extensive liver mets due to HER2+ breast cancer has never had regression despite 4 different chemo cocktails all with herceptin. She started TDM1 and within a few months she has already had >50% regression. I am hopeful that it will be a highly effective drug for you too. Soon you will be sleeping with NED and I promise Big Man will not be jealous. Hugs, Erica

breastcancerwalker said...

I only met you once but I love you like a friend. Know that your 3 day family of walkers/crew members are in your corner cheering and rooting for you. YOU are the reason we do what we do. YOU are the face of this dreaded disease and that makes us more determined than ever to fund raise and walk until we find a cure. I will be walking and crewing in your honor this year in Boston and Washington DC... you are in all our prayers.

Elicia said...

Bridget, I am speechless right now but totally in awe as to your tenacity and will to fight! It is because of this that I continue to walk. My thoughts and prayers are with you and your family. I am honored to call you a friend <3

If there is anything that we can do even if its just to listen, please don't hesitate to ask. Hope to see you in Boston in July!

p.s. I am so jealous that you got to meet Big Papi!

Christopher said...

Bridget- I was so glad to see a new post, but/and...then I read it...I am so glad though, I have to say, that you chose a trial. I hope (foolish?) that you do not have to spend quite as much time as you think on these trial visits. But, God, they can drag them out...
But, Tom's trial has and is a wonderful thing. I know yours is in an even more early stage of development, but I was so glad to hear Erica's comment about her mother's treatment with TDM1.
I want it to work for you just that way. Your spirit
affects me hugely. Keep it up.
And,,,,,,I can't believe you got to be BAT GIRL!
Plus Papi....be still my heart.
most fondly,
Christopher

Carolyn said...

Bridget,
Sharon Eaton told me about your blog a couple months ago. I am a second-time walker in the Boston 3-Day, I'm 28 years old and my mother is a 22-year survivor of breast cancer. I want to tell you that you are AMAZING. I did a dance for you when you wrote that you'd been given a clean bill of health and I cried while I was reading your post about your new diagnosis to my mom. Every time I get frustrated with something or think things aren't going well I remind myself that there are much harder things in life than the day-to-day annoyances that present themselves in our lives. I think about you and what you've gone through the past several years and tell myself I could be dealing with harder things in my life. I hope you realize what an inspiration you are. Your positivity and optimism are so refreshing. I hope that these trials produce amazing results for you because you really deserve good years of health, not to mention that puppy. Thank you for sharing your story with all of us. You are making such an impact on this world.
Carolyn