Here we go again. This is one of the pictures from the brain radiation I received two years ago. We have decided to do this procedure again with Dr. Ramakrishna, my new specialist.

Dr. Ramakrishna seems like a rockstar of brain radiation. MD Anderson recruited him from Dana Farber in Boston and he's published many articles and books on the subject of brain radiation. Everyone has heard of him. I think I'm in good hands.

I was in good hands two years ago, but I got the impression from Dr. Ramakrishna that he is not going to leave any necratic (dead) tissue behind in his procedure. Almost as if he thinks the folks who did my radiation the last time were amateurs. Awesome. He didn't say it, but it's just a feeling.

Two new tumors popping up will be zapped and gone soon. It's called stereotactic surgery and for those of you not around in Feb. 2008 when I had it before, it goes something like this. I arrive at the hospital at 6 AM. The nurse takes me back by myself and a neurologist comes in. He numbs my head in 4 spots then bolts the halo on. I am given morphine so the day, for me anyway, goes by very easily. They also will give me another medicine that helps you forget what's going on. How very spy novel of them.

Then I will be taken for a CT scan to help make sure where they are zapping me is precise. This scan, combined with my two previous brain MRI's will be what everyone goes off of for the procedure. Then I return to "the green room" with my family where I am then allowed to eat. We nosh and chat and watch TV while the physicists, neurologists, technicians, and Dr. Ramakrishna evaluate me and agree on the plan.

Then I am taken into a room with a large machine where they bolt the halo down so I will hold still for the procedure. Then those little fuckers get zapped. Then they are gone. I go home and sleep. For about two days, I will feel extremely tired, like I was run over by a truck. I will just rest and take it easy knowing those little fuckers are gone. Again.

Does it occur to me that these little fuckers popped up because I was 4 months off of chemo? Yes. Does it piss me off that I had a miserable experience with Moffitt and the trial didn't work and now I have to deal with this bullshit? Yes. But Christy reminds me that I needed the break from chemo. Oh yes I did. Perhaps the next trial I do will not be a phase 1 trial. Perhaps will see some more data that something is working and then go for it. Only time will tell.

The procedure will take place in the next couple of weeks. I have to get another MRI which will be small views of the brain to make sure they aren't missing anything. Dr. Ramakrishna puts the MRI images together in a thing called 3D fusion to make sure of everything. It sounds really cool.

So, I'm going in again with better hair and knowing what to expect. Let's get those fuckers.

The Hits Just Keep on Rollin'

Last we saw, our heroine was getting her mojo back. Her hip and back pain was gone. She started a new chemo with mild side effects and no hair loss. She was on her way to an iron infusion before sailing away on her family's annual cruise to the Bahamas this past weekend. Life was good. Well, life is still good, but in the past week, life has been experiencing more challenges. Again.

Last Wednesday, I received my 2nd infusion of Gemzar. When the bloodwork came back, it showed my Hemoglobin (red blood cells mostly) was 8.4. Mine always hovers around 10 or 11 so this is the lowest it has been. Since I already had a "chair" appointment on Thursday for the 6 hour iron infusion, the doctor gave me the choice. Did I want a blood transfusion or the iron transfusion?

How the H-E-double-hockey-sticks should I know? Apparently, another miracle of my cancer trip has been that I haven't had to do a blood transfusion in all of this time in treatment. I was a bit freaked out about it from the nightmare stories of the 80's and since I've never had one before. MD Anderson has their own blood bank that they use and obviously, they do blood transfusions for cancer patients with low blood cell counts all the time.

Since the nurse wouldn't give me any guidance on which one to choose, I went with the blood transfusion. This scientific calculation in my mind was based soley on the fact that a blood transfusion of 2 units would take 4 hours of my time, while an iron transfusion would take 6 hours. I'm not proud.

But, it turns out that the blood transfusion was the way to go. Afterward, the nurses were saying that was the wiser choice. It would give me energy and boost my iron at the same time.

Now, when I was on the phone with Frenchy/Lynda, Dr. Shah's nurse, from my chemo chair on Wednesday, she asked me what side effects I was having as a result of low hemoglobin. She asked if I was having heart palpitations, shortness of breath, or extreme fatigue. In the hospital, I was having none of those things. But when I went home that night... whoa nelly.

Extreme fatigue does not even begin to describe what I felt last Wednesday night. I barely had the strength to get up and walk. My husband ALMOST had to help me use the bathroom. I was so tired, it felt as if I would fall asleep, and never wake up. I'm not trying to be negative here, it just really felt like I needed to sleep for like... a decade. I have not experienced anything like this before. I've been tired, but nothing like this.

So our cruise was looming ahead and I was swirling around solutions in my mind for postponing it. There was no way I could go and just lie in the cabin the whole time. Somehow I dragged myself on Thursday to the hospital for the blood transfusion. I could feel the color returning to my cheeks that afternoon. I was hopeful that energy would be returned to me and slowly it was.

Friday morning came and the packing began. We got checked in and moved into our stateroom. But by the time dinner came, I had my head in my plate. Damn it, I thought. This is how the whole vacay is gonna be. Shit. Even Jake asked if I was going to be this tired the whole cruise. Broke my heart. Then I remembered that the motion sickness patch behind my ear had a warning on the box: may cause drowsiness. So I ripped it off right at the dinner table and immediately felt better and more awake.

Saturday morning came. Arrival in Nassau, Bahamas. Energy was mine! I had some onboard credits and in the morning used them in the cruise ship's spa with one of the specials they were running: 20 minute hot oil massage, scalp massage, aromatherapy facial, foot and ankle massage. It was magical. We disembarked and walked around the shops of Nassau. We took a taxi over to Atlantis and checked out the resort and aquarium. It was awesome. $565/per night--holy canolis.

We returned to the ship and relaxed before dinner. After dinner, we went with Jake to two shows and rock-a-roke--that's karaoke with rock songs for those that don't know. He was the only kid in the bar. We're so proud. Then we took Jake to the top of the ship for the midnight buffet and dance party. Where did I get the energy for this day? Someone else's blood, people. Thank you to everyone that gives blood--you are true heroes. Especially those who give to people like me that are rare with our 0 Negative blood type.

Sunday we went over to Royal Caribbean's private island called Coco Cay. I sat in a hammock and read. Mom went on the nature trail. Richard and Jake went snorkeling. Mom and I got beach massages. Hello, I am cruise ship spa girl now, don't you know? After dinner, mom took Jake to a show while Richard and I had some time together. We got a drink at the bar with Richard's Uncle Bob & girlfriend, Elizabeth, and took our drinks out on the deck and talked and talked. It was lovely. Richard and I then both lost $5 each at the casino. Slow down party people! Then we bought a duty free bottle of vodka-rockstar edition. It's a bottle encased in black leather and studs. Awesome. It'll sit unopened next to our last year's unopened vodka bottle shaped like a trumpet. We just love the bottles.

This morning we returned to Port Canaveral and reality. Jake went back to school and I'm getting ready for an appointment with a new specialist tomorrow.

Here is what the cruise kept my mind off of: During last Thursday's blood transfusion, Dr. Shah called to let me know that my last brain mri showed 2 new spots. That's right-2 new tumors, people. They weren't big enough to measure and the nurse practioner, Laura, says they are smaller than the tip of a pen.

Tomorrow I will meet with Dr. Ramakrishna. He is a (and I'm not sure of the order of these titles) Radiation Neurology Oncologist. Apparently he is one of the top in his field and MD Anderson fought to get him to come to Orlando. Apparently I'm lucky to be meeting him. I'm sorry if my enthusiasm doesn't boil over at the prospect of doing brain radiation again.

I'm hoping the spots are so small that he'll just want to watch them awhile. Richard and I would like to also meet with Dr. Bobustic after meeting with Dr. Ramakrishna. Dr. Bobustic is my brain specialist that has been helping us since the last tumors popped up two years ago. Dr. Bobustic prefers to manage things with medicine rather than radiation. So, whatever happens tomorrow, we are going to try to get as much information we can and weigh our options.

So, the liver is not behaving and the brain is not behaving. I took a chance getting off of chemo for the clinical trial and I would do it again in a heartbeat if there was a chance to help future generations of breast cancer survivors with new medicines and new options. I am hopeful that these speedbumps that I am experiencing this week will be smoothed out over the upcoming days as options with few or no side effects are presented to us. This is my prayer and if you would like, please pray for it also.

I love you all and will keep you posted on what we know when we know it. One day at a time. One hour at a time. One conversation with one doctor at a time. That's all we can do.

Muchos smoochos!

We're In It To Win It!!

Ok, I'm getting my head back into the game people!

My hip and back are about 95% better. I just have to put the moist heat on occassionally and the surging pain in my right leg has completely subsided.

This was done through God and ENERGY MEDICINE and ACUPUNCTURE. I've had mostly energy medicine at MASSAGE SOLUTIONS at 2802 Corrine Drive in Audobon Park. This place is the greatest and the ladies that work there are even better. You can get regular massage or cranial sacral massage or massage with energy medicine. If you live in Orlando and are looking to treat yourself or someone else, just call them up at 407-893-3963. They're on Facebook! http://www.facebook.com/pages/Orlando-FL/Massage-Solutions/92347199040?v=info

I'm off the oxycodone completely and only had to take it for about 5 days. Awesome.

I've had one treatment of Gemzar and go back this Wednesday for Gemzar Ass Kicker # 2.

Thursday I will get my 1st infusion of iron because last Wednesday the lab came back extremely low on the iron. It is a 6 hour infusion!!! Thankfully I'll bring my work laptop and keep the world a turnin'.


I'm looking forward to report back to you that the numbers are dropping! Go Team Go!

God is good. You all are good. I am good. It's all good.

Shitty Test Results

I had my CT and got the results this week. The results were not good. The cancer grew A LOT on my liver and sternum so I’ve left the clinical trail at Moffitt in Tampa. Dr. Minton in Tampa and Dr. Shah in Orlando have been working together and I start a new chemo called Gemzar on Wednesday. It will be an infusion every week but it is well tolerated with almost no side effects.

I need this to be a n ass kicking drug of the highest order. We need to push the cancer back. This last growth spurt was 50% bigger so that is not good. The mass on my liver grew from 9cmm to 14cm. Yes, it's still centimeters. Dammit!!!

I can’t seem to get my head on straight for the fight because I’ve been experiencing excrutiating pain through my hip and rear end. A couple weeks ago the general practitioner called it hip bursitis and it's gotten progressively worse. Yesterday Dr. Shah sent me for an xray to make sure it's not cancer (negative-bones are clear) and she gave me oxycodone (wowzah) because I haven’t been able to walk from the pain. I’ll take 3-4 steps and need to sit down. I’m trying to work on it with heat and epsom salts and hopefully the pain will start going away soon. Richard and Christy pushed me around both hospitals in a wheelchair like an old lady. Wheeee. I would really like that pain to go away please.

I don't usually have a pity party or ask people to feel sorry for me. But that is what it feels like in regards to this hip pain. The oxycodone puts me to sleep. Yesterday and last night I slept for 18 hours off and on and I hate it. I have stuff to do!

I guess it doesn't help that it's so cold outside. Would I be having this pain in the summer? Who knows? I've been blessed up until now to have had very little pain. Please, please, pain-go away and leave me alone!

I am also trying moist heat application, energy medicine, massage, and acupuncture to work the muscles back to normal. All of the tools in my toolbox. If I were a video game character, I'd be throwing fireballs, flamethrowers and Yugos at the enemy. Ok, obviously I'm not a video game expert, but Yugos must pack a punch, wouldn't you think?

The good news about this whole thing is that I had a nice break from chemo and we won't have to make that drive to Tampa anytime soon. Visiting Dr. Shah yesterday was like coming home and the nurses and staff were so happy to have me back. I feel very well taken care of.

Love to you all and please keep praying! I need it!

Laura

Happy Everything to You!

2009 has offered many challenges and many blessings for me and my family. We are so grateful to you, family and friends, the most for the caring and support you offer during the good, the bad, and the ugly. Thank you for all that you are.

Hug and kiss one another and be grateful for every minute of every day.

While you're doing that, send up some prayer flares for me. As the day gets closer and closer, I can feel my anxiety building, although I promise to try to live in the moment the best I can.

January 5th-CT scan at Moffit in Tampa

January 7th-CT scan results and meet with Dr. Minton whom we've only met the one time

If the CT scan shows the medicine is working, I will continue on the clinical trial. Less side effects-more hair and energy!

If the CT scan shows the medicine is not working, I will proably go back on chemo and return to getting treatment in Orlando.

Either way, I have lots of options so we'll just take it as it comes.

I love you all very dearly!

Happy Everything!!!

The Right Person for the Job

Yesterday I was home in bed fighting a horrible sinus infection that has kicked my butt all over the place. I called the clinical trial coordinator, Kathy, to tell her about my itchy rashy side effect (under my arms-don't get any dirty ideas) and mentioned the craziness of the last visit. I was so upset and I didn't even go into that much detail. So I asked Kathy for the number of the Clinical Research Unit Manager, Jill. I left her a message about being very upset about my last visit.

Jill called me back within an hour even though her vm greeting said she would be out of the office all day. She said she really wanted to hear what I had to say. I spoke to her for about an hour about everything that was said on the last visit regarding the pregnancy test. Jill and Kathy both told me that Dr. Minton's office was supposed to call me and explain why I might have had a false positive pregnancy. It seems that some cancers give off low levels of hormones that might give a false positive and the doctor's office should have called and explained that to me.

While it would be nice to receive a call from the doctor's office once in awhile (we have only met Dr. Minton the one time), if ANY of the nurses had explained that to me in an intelligent, clinical manner, I would have felt better that day.

When I went over what was said to me with Jill, she seemed appalled, shocked, embarassed, all at once. This is the only proper response.

Jill was a much better person to talk to then the Patient Relations Rep. She seemed genuinely interested in how I felt about things and put a lot of emphasis on ethics in the hospital. She told me she is going to have a meeting with all of the nurses to discuss what happened with me and that EVERY aspect of that incident was handled poorly.

Jill also knows I got a rocky start with my experience with Moffitt and we went over that as well. She asked what she could do to make it better and I just don't want anything. I just want to give the feedback to the proper person so that future patients don't have to experience the emotional roller coaster of having nurses tell you you're pregnant when it's not biologically possible. Putting it on me, the patient, "maybe they only took one ovary, not two-are you sure they took both?" That is definitely not the way to go. Jill vehemently agreed.

It was nice talking to someone that was really listening. I hope the nurses don't all hate me for this. I'm just trying to survive cancer with a little bit of dignity and positivity.

Keep praying that the drug is working. I'm so very hopeful that it is. We'll find out for sure the 2nd week of January. I'm sure that will be a lengthy post indeed.

Love you all and Happy Everything!!!

Good News at Last!

I was back at MD Anderson for a follow-up MRI yesterday. My brain is still stable. No new activity! Hoorah!!

I've been off of chemo and any other medicines that cross the brain/blood barrier for 4 months now on the clinical trial drug. I didn't think there would be anything in my brain (empty brain jokes please) but it's still pretty nerve wracking waiting for the results.

Same old spot on the brain is just sitting there. No swelling (swelling is a sign of live tumor) and not much dye intake (another sign of active tumor) so the doctor is guessing that it is still dead tissue from the original brain radiation. Will get another MRI in 3 months to check on it again, because you just don't want to mess with things that might pop up in your brain.

One of the most encouraging things the doctor said was that no matter how far away the other cancer is in your body, if it's growing, there is a good chance activity will show up in the brain as well. So, he was hopeful that this was a good sign the trial drug is doing it's job. Dr. Bobustic is just wonderful and he has been very encouraged by my scan results and he was quite enthusiastic about the clinical drug I am on and the data that is out on it.

Great appointment over all.

I went by the ol' chemo floor and said hello to the front desk gals. Elaine says she saw my news interview on tv but she knows the truth that I am not that serious. Ha! Went by Dr. Shah's office to say hello and give some feedback on Tampa.

There was one pretty awesome random act of kindness. There is a woman named Miriam that is very helpful when I have to schedule my brain MRI's. Well, the other ladies always give me a hard time when I want to schedule the MRI and the doctor's appointment for results on the same day, which is what Dr. Bobustic has always told me to do. But it's easier to spread it out so I have to tell certain people that I would like the appointments back to back. And their response, well I don't know if I can do that.... then I assure them they can do it and thank them for the extra effort. Miriam, however, always offers to do it right off the bat. We love her. So, anytime we walk through that hallway at MDA, I always go by her desk and say hello to Miriam.

Well, apparently she has been looking for me for a few months because she bought me the cutest hat. She was so happy to see us yesterday and ran around the desk with the hat. It was one of the cutest things I have ever seen. She just said I was always so nice and she was keeping it at her desk in case I walked by and there I was. How do you like that for random act of kindness?!

People are good.

Keep praying, friends. It's working. CT results on Jan. 7 will tell us how the clinical trial drug is doing. Pray Pray Pray!

Love you all!

Laura