Saturday, July 24, 2010

Vacation Feels So Good!!

The term this is your "new normal" always annoys me. Ok, pisses me off. I never asked for cancer and I don't like having a different normal from anyone else. Personally, I think the term is used better describing prison inmates. Here's what you get for killing and raping-welcome to your new normal and now rot to death. You screwed up and a "new normal" is your consequences.

I want to be able to do things that everyone else can do. So that's why we plan vacations and trips and fun times. That's what everyone does! So cancer, shove your "new normal" up your ass.

We are currently on an amazing road trip. The Goldstein trio drove to Georgia and stayed at the New Perry Hotel in Perry, GA our first night. Richard remembered this as a much more charming place to stay in years past and we got a big heap of local flavah with this one. The room was nice but the pool was green and the restaurant never opened for business. But we did eat at a heavenly southern place around the corner and the fried green tomatoes alone were well worth the trip.

Then we went to Six Flags Over Georgia. I used my handicapped placard for front row parking-yeah bitches but we paid full price to get in, which kills me because EVERYONE there had coupons or coke cans or something. Then we got an ECV (electronic convenience vehicle for those of you that don't know) so I wouldn't have to walk the park. Riding and conserving energy allowed me to ride as many roller coasters as possible. Yes, it's quite entertaining to roll up on your electrice wheelchair to the exit and get seated on a huge ass roller coaster, but fuck that. I'm here to ride some rides, bitches, and if I had to stand in line or walk a lot, we'd have to leave after 30 minutes. The Goldsteins were able to ride 8 roller coasters that day! It felt so good to get on there and scream my head off and experience the thrills with my family. It just feels good to be able to hang, ECV or not.

Then we went to visit our friend, Jennifer, in Cary, NC. The Lego Summer Tour happened to be in town and we got to stop there and see Lego things for Jake. We thought they would be throwing out swag like a real concert but in order to win prizes you had to sign your family up and participate in games onstage. The only open slot was 4 hours from when we arrived and that just wasn't happening, so the nice Lego employee gave Jake a cool keychain and we were on our way. We hit Trader Joes' before leaving town, of course, and I believe Jennifer and Trey might be new TJ converts--that is, if I did my job the right way. The highlight of our visit was meeting Bubba Dog face to face--what an amazing and awesome dog!

Then we met John and Devon in Williamsburg, Virginia. All of us went to Busch Gardens the next day with my friend from FSU, Lee, and his wife, Kim, and their kids. It was an amazing time. Another ECV and more roller coasters. Awesome.

The next day we went to Colonial Williamsburg. How cool to be able to step back in time and be back in the 1700s. I thought they were all actors there in costume but the trades are performed by real experts and all the stuff they make on site is used. It was amazing. Jake got to play a harpsichord and was awesome. He also brought his guitar on the trip and has been playing some amazing stuff for us.

Now here's where the "new normal" bullshit creeps in. The next day we were all packed up in the hotel and getting ready to go to Monticello 2 hours away in Charlottesville. At the free continental breaky in the hotel lobby I got a nosebleed that would not stop. This has never happened to me before but one of the chemos I am on can totally affect the vascular system and cause nosebleeds. After an hour of not stopping, we called the doctor in Florida. The nurse called back and said I had to go to the emergency room so the Williamsburg doctors could check my platelets. If they are low, maybe I need to get some platelets. So, shit, we had to drag the kids to the hospital-- tra la la.

The hospital in Williamsburg was awesome and took great care of me. Short version of story--doctor shoved a large cotton thing up my nose and then used a syringe to shoot saline up there so it would puff up like an enormous tampon. It actually had a string attached to it which she taped to my face. The nurse took blood from my port without any numbing cream or spray but she did say "big ouch" just before puncturing my skin with the large needle. The bloodwork came back great. The platelets were 79, higher than they've been the last few times I was in for chemo, which we had to skip. (This has given me good energy for the trip methinks) So we're getting ready to go and the doctor says she wants me to keep the face tampon in for 48 hours and when I get to Charlottesville, go to that hospital and have them take it out and shoot more saline in my nose. Hmmm... I don't think so. I was not about to walk around Thomas Jefferson's house with a big tampon in my face. Not to mention that my copay for an ER visit is $200. So we asked her to take it out there which she did. I've had a few minor nosebleeds since, but they all have stopped pretty quickly. Yay the body that heals.

This hospital fun didn't put us too far off our schedule, but since TJ's house closes at 5pm we drove to Charlottesville but went to Monticello the next morning. John and Devon left after that instead of going on with us to Shenandoah National Park.

Monticello was such a fond memory of mine growing up and I was so excited to go there with Richard and Jake and it was so cool to have John and Devon there too. This trip does make me miss my dad since driving around Virginia and historical sites was definitely his territory. I'm sure he is watching us with a big goofy grin of approval.

Shenandoah National Park was amazing. We saw deer running wild everywhere and bought a lot of stuff at the gift shop we probably won't ever use, but hey, we're supporting park preservation, no?

I am now writing this update from the library in Rehoboth, Delaware. We are visiting my cousin Dawn and her husband George and their awesome dog Smax at their beach cottage. It is awesome and definitely time for us to rest and relax at the beach and enjoy being with each other and Dawn and George. It is absolutely gorgeous here and I am so grateful for every moment.

We'll be back at home in a few days returning to our old normal from a new vacation normal... does that make my new normal an old normal with a twist? I'm very confused about what normal is really supposed to feel like.

I don't think anyone can say what is supposed to be normal for anyone else. You just take life as it comes and do best you can. That's all you can do. For now, I will enjoy this time and this trip and be as grateful as can be. Sorry if it reads a little like a family Christmas letter in July... I'm grateful for everything--especially you if you're reading this.

Keep praying and sending good thoughts--look at all of the things you are helping me get to do!

Love you!
Laura

Saturday, July 3, 2010

It's My Birthdaaaaaaay!

It's my birthday month, my birthday month.... tra la la la la, it's my birthday month....

This is the song I sing to myself and my poor family every year. I don't get just one day or one week to celebrate the fabulous day I was born, I get a whole month. Dammit.

I turned 37 today. Last weekend we had our annual BBQ extravaganza with lots of people, food, drinks and fun and togetherness and that was the party. This weekend is about relaxing and feels very nice.

I am so grateful to be having another birthday. I don't mean to sound morbid or make anyone uncomfortable because I know my cheering section is full of "what are you saying? you are going to have a lot more birthdays" and yes, I would agree with you. I'm not disputing that. But something has to be said about just pausing and really taking it all in.

I was diagnosed with stage IV breast cancer at the age of 33. Growing up, hearing about that would have been followed by a death sentence. At no time has my doctor given me any projections or evaulations of time in my prognosis. She insists that I am not a statistic and stage IV is now considered a chronic disease rather than a terminal one. I am happy to fully support her statement and be literally living proof of it.

But there are still women dying all the time of stage IV breast cancer. So will I or won't I? Who the hell knows? I just take one day at a time and enjoy the shit out of my life and those around me. Isn't that what we are all supposed to do? I just love my life and can't worry about when it's going to happen. I continue to meet stage IV survivors that are 5 years out, 10 years out and every once in awhile you hear about many more than 10 years out. If I'm going to think I might die like other women in 1 or 2 years, it would be so unfair not to stretch the fantasy to include the possibility of being like the women who are 10 years out. So I try to keep my mind in the place of possibilities. And in the present.

On today's birth anniversary, I reflect on surviving for 4 years after diagnosis. That is just simply awesome. Especially because I have had metastatic disease in every possible place it can travel: brain, liver, lungs, bones and soft tissue. And here I am. Holy shit. Thank you God for letting me enjoy myself and my family and friends and for being able to express this gratitude to them through this blog. I hope they all know that I could not make it through one day of treatment without them.

Let's recap some recent miracles. My brain is stable and the spots they were watching are actually getting smaller. Last week we saw the doctor and she gave me a graph of my tumor markers over the last year. The numbers are dropping SIGNIFICANTLY now -you should see that damn graph. It peaks in January at some horrid number like 1500 and takes a straight drop down to somewhere around 100/150. Holy shit again. The doctor, nurses and I are doing crazy random happy dances all the time now. We are very encouraged that the current chemo is doing it's job. Yay Carboplatin/Avastin/Tykerb/Herceptin/Zometa. Thrice I say holy shit. If it keeps working and I tolerate it well, I could be on it for many months or even many years... all the while hoping for the next big thing to be discovered. That is what treatment is like for me. And it's all good. Very good. Hopefully I'll pull it together and scan in the graph so you can see it and post it here. Then you can see the joy of all the time the medicine is buying me and all of the blessings I get to experience every single day. If you are reading this, you are definitely one of my miracles, thank you.

As grateful as I am to be having this birthday, I wish I could say that the declaration of the "birthday month" was something that came after the cancer diagnosis and that I've earned it after having to take shitty chemo and go through all this inconvenience and fatigue and cancer bullshit. But alas, I subjected everyone to my birthday month well before cancer because I'm really at my core a selfish little bitch and everything is about me. I'm not proud. I am so grateful for this chance to be myself. It's my birthday month, my birthday month. Tra la la la la, my birthday month!

Muchos smoochos!
Laura