Monday, May 31, 2010

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!

Tuesday, May 25, 2010

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!

Wednesday, May 19, 2010

Back in the Saddle

Tomorrow I start my clinical trial. The Big Man is ready to go with me. We report at 8 o'clock and should finish around 5pm. I got my schedule via email earlier this week. The nurses actually fit in 20 minute bathroom breaks. The schedule reads "you may eat or go get fresh air now" in between scheduled tests, blood draws and drug infusions. Awesome! Then I get to go right on back on Friday morning for another full day.

Hopefully, everything will go smoothly and the side effects won't be too terrible.

I am a bit at a loss for words today. I just have my eyes on the prize. Since I am at a loss for words, which is quite the rare occurrence, I wanted to take this opportunity to lighten things up a bit here. I've noticed this blog is getting much too serious for my taste.

This is me 6 weeks after a mastectomy.

Now, I am not endorsing foolish behavior. That was foolish. And please don't tell my doctors. But no one got hurt and I felt damn good! Yes ma'am. I really truly know how to fall off a horse, or bull in this case, and just get right back up and try again. I did pretty darn well, thank you very much!

So tomorrow, I'm going to put on something cute, although probably not a skin tight dress, and I'm going to get right back up on the bull that is chemo and hang on for a little bit longer. Cancer has knocked me to the ground a few times, but it most certainly hasn't kept me from standing right back up and dusting myself off before trying again.

Have any of you ever ridden a bull? If not, I think everyone should try it at least once, but I would recommend wearing jeans!

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!