Monday, May 31, 2010

Finally Some Good News!

My brain mri results were excellent! Brain looks good.

The new spot they were watching to see if it was another tumor got SMALLER! Just let that one sink in for a moment. Overall, multiple spots they were watching got SMALLER as well. After months and months of shitty news, this is nothing short of miraculous.

I probably would have tongue kissed the radiation oncologist if he wasn't such a cocky guy. Well, and Richard wasn't such a much better choice to kiss. Dr. Ramakrishna came in and said, the brain looks good. I asked him about the new spot he said it got smaller. He said we don't have to do anything with your brain right now. Then he went on to talk about my spine, breezing over all that wonderful brain news. But didn't he know I wanted to lunge at him off the chair with the paper runner and shake him while screaming and crying----yeah! Fuck yeah! Get those fuckers! Yeah! Nothing more with your brain right now!

But I didn't. I sat there and smiled and felt the weight slide off of my neck, back and head. When I got into my car alone (Richard and I drove separately to the appointment) I was screaming and laughing at the top of my lungs. God bless all the other drivers on the road that acted like they weren't driving next to a crazy person. Ahahaahaaaaaaa! Mother fucking cancer-take that!

Back to the doctor's office--then we talked about my spine. Lumbar 4 needs radiation as it is covered in tumors. Dr. Ramakrishna ordered another mri of the spine to compare it to the last one and said we'd proceed with either one sterotactic treatment or 10 standard treatments. I'll skip all the bureaucratic bullshit and telling all my tales over the last few days of the left hand not talking to the right hand-quite frankly, I'm getting tired of talking about navigating through all the ridiculousity that goes on at a hospital.

Cutting to the chase... I am slated to have 5 standard radiation treatments on lumbar 4-yes, that's different from what the dr. originally said, but remember, I'm skipping all that bullshit. The treatment will be 5 days in a row for about 15-20 minutes a day. Then I'll be done. I'm told the only side effects will be fatigue and maybe some diarrhea. Ah, more poop problems... a topic for another time.

The radiation on my spine should be a piece of cake compared with what I've been through with the brain. I should be getting a call within the next 7 days letting me know when to come in and meet my radiation technician. Then I'll know the exact schedule.

I've been having some pain in that area. It's sporadic, but it's getting worse. Whenever I lie down a certain way and get up it hurts. After the radiation, that should all go away. This will also be great for our family road trip at the end of July-all that sitting and driving. Wheeee!

After the radiation, my next CT, bone & heart scans will be the first week of August. Ah, for now, it's just nice to get a bit of a break and get back to the routine called life.

I'm very hopeful that this current combo of chemo is kicking some serious ass. For now, I'm feeling good, living life and laughing a lot. Thank you all for you love, support and prayers.

Rock!




Wednesday, May 26, 2010

No Parking On The Dance Floor

I got a disabled parking placard.

I dragged my feet on this for a long time and only a few people even knew I was even considering it. I mean, I look perfectly fine and I have energy to be able to work full-time and still do normal family things like everyone else. I don't want to take any spots away from people that are in wheelchairs, crutches, and what not. But I gotta tell ya, sometimes I just need it.

On and around chemo days, I feel so run down that it's all I can do to run just one or two errands that we need. I didn't want to admit that I needed the placard. That would be admitting that I'm actually sick and I hardly ever feel sick, for crying out loud. Unless it's walking around a theme park... and that's only once in awhile so I could just act like all is normal and be like everyone else.

But I'm not like everyone else. I have to take poison once a week and take naps and plan my energy for activities in advance. I have to say no to a lot of things I'm invited to because I know I just won't have the energy to do it. People, that just sucks.

So don't judge me. I want it both ways-I want my cake and yes, I would like to eat the whole thing too. I refuse to be referred to as the "sick" girl but if you see me getting out of a disabled spot there is a good reason. I don't give a shit what strangers think-they'll give me dirty looks no matter what, but my friends should know I have good reason to use the placard. I won't abuse it, really. But if you'd like to invite me to large scale concerts or sporting events, let's use it! Dang, I just gotta check my energy level first. :-)
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Brain MRI results with Dr. Ramakrishna tomorrow. We'll talk about the brain and when to radiate the vertebrae located at L4. Fun times. More updates soon. Tra la la!

Sunday, May 9, 2010

Meeting Mets Magic

The weekend of May 1st and 2nd, Richard and I took a trip to Philadelphia for the 4th Annual Metastatic Breast Cancer Conference, organized by a group called Living Beyond Breast Cancer.

I was very lucky that both Richard and I received travel grants to be able to attend this conference. It was an incredible experience to have Richard there with me as I listened to health care professionals, and others, that affect the cancer "trip", as well as meeting some amazing breast cancer warrior women. It was so much better to have him there with me then to try to tell him about things later. He's a great person to bounce my thoughts and fears off of as we were raking in the intended conference information.

There was an overview of the progress being made regarding mets specifically and what to look for in the future. We attended the bone mets workshop and came out with lots of new questions to take back to my doctors. On Sunday, I went to the lung & liver mets workshop while Richard went to the caregiver workshop. We both got something out of each workshop and were glad to have attended for the information.

More important and more exciting though, were the women that we met that weekend. I found that most women had my sick, sarcastic sense of humor, making jokes about cancer that would make the cancer civilian completely uncomfortable. We talked about the same worries and fears and laughed about similar medical stories and misinformation. It was a familiarity that is similar to those old friends everyone has that no matter how much time passes, you can pick right up where you left off and it feels like not a moment has passed. I cherish all of the women that shared a part of themselves and their story with us.

Two amazing women-Tricia and Andrea-rocked our world. We all went to dinner on Saturday night and talked for hours. Tricia was nice enough to drive us to the airport to save us money on Sunday and we loved having the extra time to talk. Andrea and I had a lot in common by way of energy medicine and other experiences, and Tricia was just such a great person to talk to. I love these women! Cancer gives so many shitty gifts but it also brings wonderful people together that would never meet otherwise. So many blessings around the bullshit.

All in all, it was a wonderful conference. It was smaller than the YSC one and had a much shorter schedule, but that's because YSC has been around 10 years and this one was 4. I am hoping that the mets conference keeps growing so it will be jam packed with things to do in the future. Mets women out there unite! If you are feeling good, get out there to that conference!
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Medical update-the Thursday before the conference, had an MRI of my pelvis, spine & neck. Dr. Ramakrishna wants to radiate L4 on the lumbar section of my back. It's not urgent, so we're just going to chill out for now. I'm going to see Dr. Ramakrishna again in 3 weeks for my brain follow-up and we'll talk about it then. I won't bore you with the ridiculosity that was how we were told there was a problem with my lumbar. This is more about the amazing conference we attended. But it is so important to be diligent and do not let some amateur nurse covering for your normal nurse try to give you medical info that they shouldn't. Stand up for yourself and do not accept anything but professionalism from EVERYONE.

Happy Mother's Day to all-especially the amazing doctors and nurses taking care of me! Yay! Thank you for you!