What's up friends of Cancercopia? Unfortunately, there is a lot up with me since that last post.

I'm happy to report that the evil lumpy's radiation is complete. It was relatively easy but burned the shit out of my skin. The lump itself today is about 1/4 what it once was so there is progress. The last 2 weeks it has grown even more grotesque as it continues to cook while I am away from the hospital. Ah, yes, I continue my reign as the craziest walking science project you know. Who could challenge me? Muh ha ha!

You can feel the warmth emanating from my sternum as it hopefully fries up some crispy cancer ass. Beginning yesterday, we have some new additions to this saga. Oozing, bleeding blisters. Mmmmm.... I hope you're not reading this over breaky. Today's count was about 5 blisters opened up with puss and bloody goooo---actually there were about 3 yesterday, just in time for a real life Halloween display. Candy anyone?

Apparently, these oozing open sores are a good thing. The nurse told us to expect them and that they were a very good thing. Apparently my body is rejecting and ejecting the evil. Go body go! I am happy to go through this knowing it will pass and all be better after awhile, but let me tell you friends, my chest hurts like a mother trucker. Wowzah. The strain on my chest muscles has moved into my right shoulder and up my neck and pain shoots down my right arm. Not to mention the pure pain from the raw open flesh wound you can't take your eyes off of if you're looking at me full frontal. Don't worry, I've resorted to neosporin and bandages to cover it so you don't have to look away. I'm not an animal!!

I've been struggling with my own stubbornness and refusing to take anything for pain stronger than Advil... uh, make that several Advil a day. Which means I've been in bed in pain a lot.

Yesterday I was in so much pain, my husband asked if he should call the oncologist on-call. I said, no because all he's going to do is prescribe some constipation inducing pain meds that make me completely blotto. About 10 minutes later I realized I might pass out from the pain, so we decided to call the doc. Wait! We didn't need to! We remembered I already had some pain meds. After 3 1/2 years of treatment, I don't even know which meds I have anymore or don't. Bullseye! Hydrocodone!! Substitute for Vicadin!

The rest of my blog will be dedicated to my new friend, Hydrocodone. Wow, what a difference. My corked ass be damned, it really helps with the pain. Cancer survivors out there you know what I'm talking about with the constipation vs. diarrhea dilemma but right now I just need a bit of relief. I was walking around doing things around the house... sat up and ate something... the magic magic beans of blocking pain receptacles. Aaahhhhh....

October was a tough month. While radiating lumpy, I had to get a blood transfusion for energy. It was a transfusion I requested and made a world of difference. Major thanks to anyone out there that donates blood. It is really important. The day I got the transfusion, EVERYTHING, went wrong to get there so imagine something written here that's really funny and annoyed from that experience. I'm just too tired to go back, so I'll just try to catch you up moving forward.

I do have to pause and let you know that when I'm wrong, I say I'm wrong. (nobody puts Baby in the corner) Dr. Ramakrishna is totally personable and awesome these days. He is an absolute joy to talk to, and I'm not even being sarcastic. Dr. Shah gave me some insight that made sense on why he delivers a lot of the medical information to my husband instead of me. She said he deals with a lot of brain tumor patients that can't remember or retain anything so he is used to giving the information to the caregivers. Aha! That makes sense. Also, I am really liking that nurse, Heidi, whom I reamed several blog entries ago. You know, you spend a lot of time with these people and see what they deal with on a daily basis, and I don't know, I have new respect and love for Heidi. There, I said it.

Amazing news: I had a brain scan since last we met and there is nothing active in my brain!! Brain is stable. Hooray, no brain tumors to worry about. Hooty hoot hoot!!!

Same scan--the spine looked worse so I started spine radiation today. 15 treatments-yuck. I could win awards for lying still on treatment and diagnostic machines should there be an award show for cancer survivors-oh so many awards. What would that award show be called anyway? The CancerSucksies? The Nobody's Choice Awards? It would be the longest telecast ever because each celebrity would proselytize about whatever cancer cause they picked. Did you know you could get cancer in your earlobes? How horrible to not be able to accessorize! Let's help those people!

Ok, back to me. I've been ridiculously fatigued and COLD everywhere I go. I've been off of Carboplatin for 3 weeks because my platelets have been too low to get it. This Wednesday I should get it for sure. It serves as a little poisonous security blanket and I do get nervous when we skip a week. Then again, my body is going through so much with this pain and radiation I am happy for the break.

Next CT/echo/bone scans will be in December, along with another brain MRI. I've got to get through the next 3 weeks of radiation, just in time for Hanukkah which starts Dec. 1st! Oh my! Then the scans and Christmas with my family. Maybe I can sleep in 2011.

Thanks for reading. Love you all!! Muchos smoochos!!

Radiation Begins!

I am in the middle of getting 10 radiation treatments for the evil lumpy on my chest. I get 4 days of electron therapy and then 1 day of photon therapy which goes deeper into the tumor, for total coverage. I'm not supposed to have any side effects, other than burned skin, like a really bad sunburn. I've only had 2 treatments and I can definitely feel the heat on my skin. I'm trying to put aloe on it and hope the burns won't be that bad.

Dr. Ramakrishna is in charge of setting up my treatment plan and blasting this thing. Within the walls of the office, Dr. Ramakrishna is all business and doesn't have the warm and fuzziest bedside manor. That is fine, though, because he is the best and as long as he helps save my life, we are all good. Well, this last doctor's appointment, there was a bit of a shift.

At some of my hospital visits, there is a form that I have to fill out over and over again. It's the form with the outline of a body on it where you are supposed to circle the part of your body that hurts. Well, I usually take those forms as an opportunity to show that I am a real person and not just a number, so I draw ridiculous faces on the heads and add flowers or balloons or whatnot.

For Dr. Ramakrishna's appointment, I drew a hideous lump coming out of my chest and a happy face on the head. I added a talk box saying that I was in pain and needed his help. Then I added flowers in the hands of my person. Nobody took the form during our visit, but apparently the doctor saw it later.

When I showed up last Monday for the scan/simulation of the tumor, the doctor came running over to me all smiley. He said he was sorry he didn't take my form at the time but he really appreciated my picture and thought it was "communicative." Heh heh. I'll say. He kept going on about how creative I was and was so friendly and laughing. I had never seen this doctor act like that before.

But here he was, totally friendly and charismatic. I guess art, no matter how much it looks like a three year old drew it, brings people together. I am so surprised and glad to be able to have gotten his attention like that. It's fun to see him let his hair down and laugh a bit.

Eight more radiation treatments to go. Die lumpy die!!!

Hideous Bump!

For several months, there has been an area slightly to the right of my sternum and to the left of my port which has looked like swollen, raised skin.

Sometimes it looks like a bump and sometimes it doesn't. It has come and gone through the prayer at healing mass, various medications, acupuncture and energy healing.

But for the last 2 weeks it has been enormous. It is bigger than a golf ball and it hurts. It hurts when I hug people, which I do a lot, and it hurts no matter which front seat I sit in when the seatbelt is pulled. It hurts when I lie down to sleep. And it looks hideous and abnormal and scares the shit out of me. There, I said it.

Perhaps once it is gone they will find teeth and a spinal column....

Yes, the doctor is aware and asked if I was ready to radiate it. Since we've been watching it for quite some time, it was something we already discussed. However, the NP suggested I try some more guided imagery so I've been trying that for over a week. I guess I'm not very good at it because it's still there. Dammit. Why aren't I more new age? Where the hell did I put those incense sticks from college? Oh, yeah, that's right, I couldn't stand that fucking stench and didn't smoke pot in which I needed to mask the smell from my neighbors. Guess that's why I have so much cancer now.

I was trying to hold on until October 8th before taking the next step to radiation. On October 7th, I will be getting a brain and spine MRI and on October 8th I will meet with Dr. Ramakrishna to discuss the results. I was going to ask him about the hideous lump at that time.

But it's definitely time for plan B. I'm calling my doctor tomorrow and asking her to get me going toward radiation because I can't take this deformity anymore. I need some help and relief from the medical resources that are available. I'm going to ask that Dr. Shah tell Dr. Ramakrishna that she's seen it and he needs to plan whatever he needs to plan to set up radiation. I don't need another appointment with him to look at it and go, "wow, guess we should radiate that" then he takes my $50 copay. If I have to do that, I will be very pissed. Especially because Dr. Ramakrishna likes to deliver his statements to my husband, rather than me, the patient. All of this we put up with because he's very good at what he does and has been instrumental in helping save my life. I'm just saying I don't have any emotional resources left to deal with petty bullshit. I'll keep you posted, my lovelies.

Please keep sending prayers and healing thoughts. Get out your incense or anything you think might help. I would love to wake up with the lump gone and no reason to set up yet another radiation procedure.

Thank you and love to all!

Laura

Team Laurapalooza Time!

Click on the Team Laurapalooza text above to see all about Team Laurapalooza at this year's American Cancer Society's Making Strides Against Breast Cancer 5k walk.

This year's walk is Saturday, October 23, 2010. It starts at 8am and Laurapalooza will be meeting at 7am so we can do our best to get a team picture and stay together through the thousands and thousands of people. We will meet to the left of the stage where the musicians are performing-if you are looking at the stage, walk to your left.

Another great thing about this 5k is that it is non-competitive. No one will be recording anyone's times and lots of people show up with babies in strollers and dogs on leases. I think my mother-in-law will be coming out in her wheelchair again!

You can join the team online and fundraise for the team, or you can just show up and walk. I am always overwhelmed by the amazing people that come to walk with me and show their support. Thank you for all team members past and present!!

And remember Team Laurapalooza's motto: Fuck Awareness! Find A Cure!!!

Muchos Smoochos!

Rockstar Scans!!

I'd like to share this awesome graph and lots of good news with my cancercopia family. Go with the image posted sideways. I can't figure out how to turn it because I have no patience.

This is a graph of one of two tumor marker tests. This graph shows the last three years of my treatment. Tumor marker tests are blood tests that indicate the number of tumors that are circulating in your body because the cancer cells read differently then normal cells... something like that. That's my unsophisticated interpretation of what's a lot more scientific. All I know is that it's great when they go down and really sucks when they go up.

Last January, this 27-29 test registered my tumor markers at 1400. 1400!!! Now they are 90. That is amazing. (A person without cancer is probably around 33) Holy shit!!! Can you believe it went up so high and is now so low. We are so excited!!!

The other test is the CEA and it went up to 775 in January and is now 64 (normal people are around 5). That is also amazing.

This current chemo plan is working!!! Hooray!!

CT scan was excellent. That is the 1st good CT I've had in a very long time. CT showed that cancer on both lungs and liver is going down. Before, the whole left lobe of my liver was covered and that cancer shrank significantly. There is one tumor on my right lobe that got bigger, and they'll watch it, but overall great scan. The radiologist actually used the words "considerable resolution" which has never happened. I was sobbing on and off for a week! I got the CT on a Monday and the nurse called me at 8AM on Tuesday to give me the good news. Once I got passed freaking out because she was calling me (usually means something really bad) it was a total love fest.

Bone scan was stable. There is a suspicious area around T5 but we'll take a look at that on the next scan. They aren't worried because I am not having any pain. Stable is good.

Brain MRI was clear. No active brain tumors, just pictures of radiated tissue past and even a couple of those got a bit smaller. Awesome!

Thanks for all the prayers and support. Please don't stop!

Love you all!

Laura

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

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