Chug Chug Chuggin' Along

Well, the excitement of brain radiation is over and life has returned to what is normal for me. Chemo every week for three weeks and then one week off. Currently I am in my week off and it's just so nice. Yes, I'm super tired all the time still because there is a war of good vs. evil waging in my body. Good will prevail!!

It's nice to be in the office all week. It feels normal to be able to pop in on co-workers and go to last minute meetings for the grads. And I have to admit I like to appear somewhat "normal" to others.

That is, if you call a horrific acne rash all over my face normal. Thank you Tykerb. It's a side effect of that medicine. The doctor says people who have breakouts on Tykerb are usually the ones that do well on it. I had a small rash when I was on it before, but nothing like this. Upon my return after the clinical trial, it's as if my teenage years just exploded across my face. Like totally grody to the max.

One good thing to feed what little vanity I have is that I have lost 30 pounds over the last few months. The fat clothes I had to buy to accommodate my steroid puffed up body (chemo comes with steroids) are now falling off. I don't even own a belt. So, I'm wondering... Do I buy new clothes or do I wait to see if I puff up again? Breast cancer is the gift that keeps on giving and weight gain is one of her favorites. I really like losing the weight but part of the mental battle is knowing that one of the reasons I have done well on treatment is that I am not a petite girl. I have substance and girth and that has helped tremendously. So I don't want to get too small. Just one more size. That'll be it. Really. :) and oh yeah, maybe a little more hair.

My hair is the longest it has been since the diagnosis. Hooray! The back is down past my ears and the top is down to my ears. I am going to grow it as long as I can so I can say fuck you cancer!!! I look like a long haired hippy acned up teenager. Yeah, take that cancer!!

I'll spare you the ridiculousity of the scheduling of my follow-up brain MRI. Dr. Shah had to step in and reschedule it for me since I have been told conflicting information. First I was told it would be an 8 week follow-up then I was told a 6 week follow-up then they had me 4 weeks out so it had to be moved. Then it was moved and then I had to move the follow-up doctor appointments until after the MRI. Doesn't that make sense? Meet the doctors after the follow-up MRI? One nurse needed to be convinced. Me oh my. She even had to ask the doctor before she had an answer.

Follow-up brain MRI is on March 24th. I meet Dr. Bobustic on March 26th to get his opinion and then Dr. Ramakrishna on March 29th to get his. My CT, heart & bone scans will be sometime in April. So, all is status quo for now. Just chug chug chuggin' along.

Keep praying and thinking good thoughts. I know it's working! Love to you all!

Recovery and Rest

Not much going on but recovery and rest for me. Last week was one of the hardest weeks yet. Brain radiation on Monday and then chemo on Wednesday. Both pack quite a punch with fatigue and it has been an uphill battle to get back to "normal."

I did have chemo today but I am feeling much better and more like myself. Sometimes when I have to sleep all the time I just can't seem to find my sense of humor or sense of who I am. I hate that.

Met with Dr. Shah today and touched base on some things. There has been some conflict over my new specialist, Dr. Ramakrishna (treats with radiation) and my other brain specialist, Dr. Bobustic (treats with medicine). As great as Dr. Ramakrishna is, it has felt as if he and his nurse feel superior to Dr. Bobustic and have made some comments in front of us. As a patient, this puts me in a bit of a tailspin because you want to know that every doctor on your team is on the same page.

Also, Heidi, Dr. Ramakrishna's nurse very non-chalantly told me that the numbness in my head may never wear off. ARE YOU KIDDING ME? Here's what happened-Monday was the procedure. I had this amazing nurse taking care of me throughout the day named Tammy. Tammy told me at the end of the day that the numbness would wear off in 10-12 hours. Also, when the neurosurgeon, yes, that's one of his duties, went to numb my head to put the halo on, he assured me that what I was getting was like novacaine at the dentist and not a big deal. AND-it did not take that long to wear off the last time I did this.

So, Wednesday came along last week and one side of the four pin points on my head was still numb. I had the chemo nurse call it in thinking something was wrong and they need to know they overdosed me. That's when Heidi told her to tell me that it could take months for the numbness to wear off and it may never wear off. As if I'm not freaked out enough!

Heidi called a couple days ago to check on the pinpoints in my head. I told her I was healing quite nicely and that the numbness was slowly going away but that she should NEVER tell a patient they may never get the feeling the back in their head. She said, well it happens. I said it didn't happen last time and you and Tammy need to get on the same page if that's what you're going to tell people. Just know from a patient's perspective that it really upsets us. Then she said, well, it doesn't happen every time. Urgh! Then why say it all?!

I was encouraged by Shah's nurse to call Laurie the manager for the radiology floor and give her feedback about the head thing and wanting all of my medical team to play nice with each other in order to instill confidence in everything that we decide to do. She agreed and said that MD Anderson's approach is multi-disciplinary and it shouldn't feel as if one doctor is trumping another. She appreciated the feedback.

Being your own advocate is important and tiring, but you have to speak up for yourself. No matter how long you've been with a doctor or with anything. Don't take anything for granted.

I don't take any of you, my dear friends, for granted. Thank you for everything. I also don't take any of my healing for granted-thank you God! God is so good!

I love you all!

Monday, February 8th is the day I am scheduled for brain radiation. It's called stereotactic surgery and it will all be over soon. I am still amazed at how high tech the whole thing is and the technology that is available for an outpatient procedure. Can you believe I'll go home the same day?

When they first told me I'd be doing this procedure again, I admit I was kicking and screaming the whole way. Why would God do this to me twice? And two years exactly to the date as the last time? Where has He gone? Doesn't He want me to be well? That's the promise He made. Why doesn't the promise apply to me? But who the hell am I to question Him? Does this make me a bad believer if I don't just accept everything set in my path?

So, you see, I'm not as strong or inspirational as people think I am. I am a petty child who doesn't want to do this shit anymore. It'll be three years in April. Enough already.

Breathe. Remember to breathe.

Slowly the temper tantrum I was throwing subsided. I went to All Saints Church's soaking prayer in their healing ministry. It was incredibly peaceful. I always feel as if I'm in the presence of the Holy Spirit in that place. God's peace was with me then and is with me now. Rational thoughts replace emotional knee jerk reactions. God is with me. I also went to Northland with my mom and was prayed on by a powerful gentleman. Prayer works. Prayer makes everything easier and better.

I've been breathing more and praying more and offering gratitude instead of grumblings. Writing in a gratitude journal at night really helps remind me of the blessings I have. I am truly truly blessed, even in the midst of adversity.

I don't know why I have to go on this trip. I don't know if it's to help others figure out how to deal with rough times or if it's just to remind me and my family what's important. The why just doesn't matter. I have to forge ahead knowing that I'm not alone and that I can get through anything. None of us are alone. I've even started picturing Jesus with me physically-sitting on the edge of the bed while I'm napping, riding in the car with me, etc. And listen, just because He's Jesus, doesn't mean He doesn't have to wear a seatbelt. And since I'm the one on chemo, I think I'm entitled to the last cookie, don't you? Jesus seems to enjoy my sense of humor.

Another tremendous blessing has been the people that have donated to PayPal to help us with medical costs. From the bottom of my heart, thank you so much. Words are not sufficient to show my thanks. I wish I had a non-profit code so you all can get tax write offs! It is me that is inspired by all of you. Thank you for helping us during these crazy times.

Keep praying and keep believing. God is good. All is good. Lots of love and muchos smoochos!!!

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