Fresh Fall Start

Here in Boston, the weather has gotten suddenly chilly and the days are getting noticeably shorter. For the Big Man, a high school English teacher, summer is officially over. It is a start to a whole new year. In our household, Labor Day weekend seems like a much more noteworthy holiday than even the hoopla of New Year's Eve.

In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.

Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!

But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.

Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)

Well, my friends, the verdict is in:

 I am kicking cancer's ass!

In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:

"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "

But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!

That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!

The TDM1 is working. I love my little silver bullet.

Me heading off to pre-school,
I guess at that age you didn't need a backpack?
I don't know what I love more,
my pig tales or my blue big girl shorts! 

This September is truly a fresh start for me as well as for my husband. This morning, I drove past an elementary school on my way to Starbucks. I saw and heard dozens of adorable children with shiny new backpacks, new haircuts, vivid white polo shirts, and smiles of pure joy race to visit with classmates.

As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.

Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.


I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.

I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.

Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.

I Think I Might Be Winning!!!!!

I wanted to start everyone's holiday weekend off on the right foot. Get the champagne out, people. Put away the Big Girl Pants and put on your prettiest pair of Party Pants because I am winning this battle.

That's right, you heard me. After months of set backs and pain and side effects and trying oh-so-very-hard to keep a smile, I finally got one piece of good news!

Yesterday, my scans showed that the cancer in my liver had SHRUNK!!!!!!!!!

This TDM1 really might be that silver bullet I had hoped for. Now, it isn't a cure, but it is clearly working.

For the past four years, one liver spot had been there, lurking. It hadn't changed size or shape in four years. It hadn't grown, but it certainly hadn't shrunk. Then, a few months ago, a second little bugger in my liver showed up. The scans yesterday showed that, after only two rounds of TDM1, both tumors had shrunk visibly. One went from 2.8mm to 1.3mm. The other had shrunk from 1.6mm to .8mm.

My Doctor was gleeful and I take my cues from her. I'm not planning for dozens of little pants babies quite yet, but I could have the year of quiet that I had hoped and prayed for. I might even have a couple years of normalcy and quiet. The goal is that these suckers keep shrinking and that the side effects remain manageable. My heart function dropped slightly, but it was still above the 50% mark, so we are not going to worry about that today. I am going to exercise and try to keep the ol' tinker in Lance Armstrong-style shape so that this drug can continue working its magic.

My cancer had been humming along in my body for the past four years and now its been hit with a new drug and it doesn't know what hit it! Here's hoping my little silver bullet keeps killing and keeps shrinking. But let's not hope for too much.

Today, I am going to take this news and stick it in my back pocket. I am going to enjoy a fabulous Fourth of July weekend. Big Man and I are going to let our hair down and let our breath come out in a big sigh of relief. We are going to start planning our futures as all 26 and 30 year old's should do. The world is our oyster today, and I must say, we earned it.

Cheers!

The Big Man

I am feeling really wonderful today. I had an infusion of TDM1 on Wednesday and, although the day was long, I sailed through. My tummy was a little upset and I slept all afternoon, but on Thursday I woke up and felt ready to take on the world.

Let's keep our fingers crossed that this continues. I am confident that I can fight this cancer and not compromise my day to day life. Balancing treatment and quality of life is a fine line to walk. It sometimes feels like I am walking one of those really, really high tightropes. All I know is, today I am walking that tightrope proudly, and I'm walking it in some hot pink high heels!

Because I am doing so well, I am going to take advantage of this opportunity to shine the spotlight on another. It's time to highlight The Big Man!

The Big Man makes me happy. I hope that everyone is blessed with a love like ours at some point in their lives. I met him fall of my senior year in college. CC, my best friend at BU, brought me as her wingman to a party. She was there to meet a boy and, somehow, I was the one who ended up meeting a boy.

The Big Man obtained that nickname on this blog because he is my 6 foot 4 red head with freckles and the body of the David. He who smells like lemons, and sunscreen, and all things that are good in the world. When he throws his arms around me, he makes me feel safe and I fit just right.

That first evening, the Big Man held the door open for another girl as our group started leaving the bar. He held the door open for another girl and there, in that moment, I felt the wind get knocked out of me. I wrapped my sweater around my shoulders a bit tighter and thought, “He is such an idiot. We would be so good together, and he doesn’t have any idea what he’s missing.” That was when I fell in love, but I kept falling every day after that. Everyday since I met him six years ago I've been falling ever deeper. Even tonight, as he screams at the Celtics on tv, I have to giggle and a part of me falls even further in love.

After  my double mastectomy, the husband helped immensely. He slept on the  floor of my hospital room. He held my hand. He brought me special soft  blankets from home. He helped me with my IV pole and awkward open  hospital gown as I shuffled down the hospital hall trying to offset any  risk for blood clots by getting active. He really was my knight in  shining armor. I do fall particularly in love with the Big Man at the hospital, but not because he is my knight in shining armor and not because he nurses me back to health, but because he is always so totally and completely himself.

When people get nervous, everyone does a little something different. When I get nervous, I drop things. When my mom gets nervous, she talks super loud and super fast. When my oldest brother gets nervous, he gets bossy. When the Big Man gets nervous, he helps. He likes to volunteer to help out in any way possible in the hopes of working off his nervous energy.

When the Big Man met my parents for the first time, he was constantly hopping up. Offering to carry drinks, opening doors, and cleaning. He would get up before anyone else and, while my entire family had breakfast in their PJs, Big Man was dressed to the nines in khakis and a button down and would sweep my parent's back patio...in the rain.

You get the picture.

Anyone who has spent any time in the hospital knows that it is a big game of hurry up and wait. After checking in at the front desk, you are ushered into a waiting room. Twenty minutes later, your name is called and you are escorted to....another waiting room. Five waiting rooms later, you are awkwardly sitting in a paper gown on an uncomfortable exam table...waiting.

Chemo is no different; lots of activity for very little forward progress. The tactic the chemo peeps like most for making you feel like you are moving forward when really all you are doing is waiting is providing you with bogus updates. The Chemo Pharmacy takes HOURS. My infusion only lasts half an hour. The active dripping of drugs into my veins takes 30 minutes. And yet...I wait for the pharmacy to mix up my drugs for two hours. Two whole hours.

So the greatest trick that the chemo nurses use is providing you with "pharmacy updates". A couple weeks ago, the Big Man graciously accompanied me to a whole full 10 hour treatment day. After hour 3, the nurse comes to apologize for the wait. "The pharmacy is just mixing up your drugs now. Really, they should be ready any moment. I'm sorry to keep you waiting, but hang in there!"

I smile and open a new magazine knowing that this explanation is code for, "You've got at least another hour, babe." The Big Man looks confused and then quickly stands up straight, nervously wiping down his khakis.  "Do you need my help at all?" He asks the nurse,  "Can I do anything to help you?"

Ahh the smile that came across my face. This is why I married the Big Man. No, honey, you can not go back into the lab, throw on a white coat, and start stirring a big bowl of chemotherapy together like it's potato salad. But I love that you offered!

Thank you, Big Man, for being you and thank you for loving me.

Happy Memorial Day!

Happy Memorial Day weekend, everyone! I hope you are all entering this short week well rested and, ideally, with a nice tan. It turns out,  the Big Man and I actually had a great weekend.

Last Wednesday, after I cried "uncle" to my oncologist, I went in for a physical and some blood tests. Turns out, the back pain wasn't my only problem. My platelets, which help with clotting if you get a bruise or cut, had fallen even further and were in dangerously low territory. Low platelet count is considered anything under 100,000. If you are 100,000 and above, you are OK for surgery. Below 100,000, you need to be careful because no one will operate on you if something goes wrong!

My platelet count on Wednesday was 15,000. Not good.

15,000 platelets + horrible back pain = my doctors were eager to get me off of the pill, GDC-0941.

My docs said they had never seen these sort of side effects so quickly in other patients. Another patient had complained of back pain, and others had had trouble with blood counts, but I was the first to complain of both at once and so severely. So I was ordered to stop taking the pills.

Apparently, doctors are good people and like to follow, not only side effects, but also a patient's recovery from those side effects in these Phase 1 trials. This means, I am still allowed to be in the clinical trial! YAY!  I am going off of the pills, but I am still in the trial. I will keep visiting the doctors regularly and I will still be closely monitored, but my only drug regimen is a chemotherapy infusion through IV every 3 weeks. My next TDM1 infusion is scheduled for June 9th and Mamma has already made plane arrangements. The Family is back and ready to fight!

This past go-round, I did notice that I have a couple of sick days after getting the TDM1 infusion.  I feel flu-ish, sleepy, and run a fever, but I can handle a couple of low key days easily; I've been doing that for years. Bring it on!

So, armed with that good news, the Big Man and I went to a fabulous wedding this weekend. We gave lots of hugs and kisses and sage advice to the beautiful couple.  We have been married for eight months and already know everything! I had to be a bit of a hypochondriac because of my low platelet counts, so the Big Man drove everywhere (to his utter delight), I was limited to only one glass of wine all weekend, and I was not allowed to cook all week for fear of a knife accident when slicing potatoes. We ordered in, snuggled up, and enjoyed our friends and good weather. This week, I am looking forward to kicking off the summer in good spirits. My back pain is gone, my energy is back, and I am so happy.

I will leave you all with a few thoughts on Memorial Day.

Thank you, thank you, thank you to all of the men and women in uniform and to the veterans among you. I was a freshman in college on September 11th. Hamid Karzai, the President of Afghanistan, spoke at my college graduation four years later on May 25, 2005. President Karzai spoke to my classmates and me just two weeks before I was diagnosed with breast cancer. Perhaps because of that juxtaposition of our war on terror and my illness, I think often about the sacrifices of our brave men and women in the US Army. I extend to you all today a heartfelt, personal thank you. Because of the work you do at home and abroad, I am safe and able to visit my doctor for treatment. Our country is at war, but so far, we have taken the war overseas. If the war were here on US soil, I would not be able to get the five star treatment and attention that I so desperately needed this week. I complained of pain and was brought in to be seen the very next day. That prompt attention meant my doctors found out immediately about my low platelet count. For 48 hours last week, I was being monitored constantly in case I should need a blood transfusion.

My life depends on the work of our military. My life depends on the amazing United States health care system, and my life would be in turmoil if we were not at peace here at home. Not a day goes by when I don't appreciate that. Thank you!

You May Have Won this Battle....

I did not post this past weekend because the past few days have been really difficult for me. The day of the clinical trial was long and I came home and collapsed. The Big Man and I were at Dana Farber from 7:45 am until 7:00pm. We got breaks for lunch and a break from 4:30 to 6 so we made some time for a little blue plate special. We have been married for 8 months, but it feels like 80 years. Big Man gave me his arm as he helped me out of the car. We went to a place we knew well so we didn't even look at the menu. I may have ordered for him, I can't remember! We had juice and water instead of cocktails. The only thing missing was a perm and a cane.

Then we came home and I slept. I'm still sleeping, as I type this I am sleeping. It turns out "flu-like" symptoms can be code for really really killer. I have had excruciating back pain since Thursday. The oral chemo pills are causing the back pain, so unfortunately it is getting worse each passing day. I can handle one or two days of side effects, but to wake up each day and have the side effect get worse, with no end in sight, that is mentally and physically debilitating. To top it all off, I went in yesterday for blood work and was told my platelet count had fallen. I don't know what that means but the nurses asked if I've had nose bleeds. Now that is the one problem I don't have...and most certainly don't need! So today I did something I have never done before, I called my doctor and cried. I said, after only five days, enough!

I don't know what this means. I go in to see the doctor tomorrow. Perhaps I can stay on the trial and we can tailor the dosage? Perhaps I can stay on the trial and just get the one drug. Who knows? All I know is, I am emotionally and physically exhausted. My arms are weak. I am shaking. Just getting out of bed has been difficult. I can't sit up straight for long periods of time.

You know when people ask not to be kept alive on machines? This is what they mean. I don't want a life like this. Life like this isn't worth living. So, we're going to try something else. Cancer may have won this battle, it hasn't won the war!

So, I spent the past few days catching up on Grey's Anatomy's Season Finale. Ever since my diagnosis five years ago, I have become a huge fan of hospital dramas. I've never watched General Hospital, but it isn't below me. Grey's, ER, even Private Practice. I realize now more than ever that these are my people. This is my show. And it makes me feel good to watch people like me still manage to have love affairs and a spicy life. The hospital is my world. I'm a walking Grey's Anatomy, except I am not a surgeon, but that is a minor detail. And wouldn't you know that, yet again, Grey's manages to put it all into perspective for me. Not only was the season finale amazing television, but it made me feel better to boot!

My day could be worse. Even though I can't get out of bed without pain. Even though my husband cries watching me hurt. Even though I'm throwing in the towel after only five days. Things could be worse. There could be a crazed gunman out for revenge in my hospital. And there's not. So today is a good day, but tomorrow, when I am off these drugs, will be better!

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!