positivityispower

This is NOT a step back...

2011-11-05T06:58:00.000-05:00

It has been a while since I have last updated this blog. I have been doing pretty well. I taught art camp again this past summer and we had such a wonderful time sketching, painting and learning about Galveston County's history. I had an ArtWalk for my art students at the wonderful Fit TO Run and they had a blast. I am still smiling just thinking about all of my awesome kiddos! My grad classes have been wonderful too! I have nearly completed my masters - one semester/2 classes left. I can't believe it is already here. I have met some amazing people there too! Last Spring, a UNT friend of mine, Rhonda, and I partnered in our class to write a grant for our class project. We chose my school. AND WE WON! This means $3000 worth of supplies that are coming to our library to create a professional literacy library that will benefit teachers and students both bilingual and English in grades Pre-K - 4th. I can't wait to put it all together! I have loved learning and I have been so blessed to finally get to be the librarian at school. As my second year in the library, I am having a blast teaching and helping everyone. I love my students and my teachers. I love getting to teach and help everyone in the library. Life outside of school has been wonderful too with new babies being born, weddings, and concerts. My hubby, family, and friends have continued to amaze me with their kindness, support, laughter, and strength.

Ok, here comes the not so great part. Things seemed to have happened so fast. I do feel like the life above is mine, but that what I am about to say feels far away as if it is someone else's dream that I am in. We have been going for our regular check ups and Dr. Benjamin has told us that things have been just fine. That the tumor in my left arm was of no concern and most likely benign and that I have no signs of mets anywhere else. However, the end of September is when things really started to get hairy. Surgery missed a tumor in my right lung. It happens. Or should I say bleep happens. No sign of mets, but it is there and at some point we will need to do something about it. I don't know what yet. I don't know because that is all Dr. Benjamin said about it for now. And to make a long story short, a pulmonary blood clot went unnoticed and we got a phone call after our 9-29 appt. that it was a pretty good size and located in my lower left lobe. I was to immediately start the shot Lovenox twice a day for a week and then every day for 6 months. I learned a little bit more then about our new insurance that the district changed to then too. We had to meet the overall prescription meds/OOP $2000 deductible first and then we'd owe 20% every time after. Easy to do when the shots are more than $1200. I am not a candidate for the other, cheaper, stuff like Coumadin because Sarcoma patients have thicker blood and it is harder to break up the clot. Then, after all of the talks about my arm being fine, we found out on October 21st that the tumor was not benign. More so, it had doubled in size since the March scan. It is in my bone marrow in my humorous in my left arm. AND on Wednesday the surgeon, Valerae Lewis (SHE IS AWESOME!!!), said that I have to have surgery on Monday to remove it. As in THIS Monday. She put my left arm in a sling because the bone is brittle and if I continue to use it like I do....did I mention that I am left handed and severely left arm dominant....that it will break. SO here is what they are going to do. They can't scrape and radiate it like they first thought. Because that would not leave clean margins. My type of cancer can leave microscopic disease behind that the doctors wouldn't be able to see until it was too late and by then it would be back and have metastasized. So on Monday, Dr. Lewis is going to resect the tumor. She will make an incision from the top of my humorous down to almost my elbow. Then she will remove about 6 inches of my bone. Then she will put in a titanium rod that looks like a lollipop. The stick part will fit into my remaining bone and the ball part will attach to my shoulder joint stuffs. It will take about an hour to close, all in all 3 hours from start to finish. I will be at Md Anderson for a few days, then home, then I can go back to work! If you want and you have extra time during the week, please please please come help me in the library. I will honestly need volunteers to help me check in/out books and shelve. I can teach all of my classes, but I will have a harder time doing this part of my job. I will have lots of physical therapy, but we have been to the wonderful 23rd street location when I had to learn how to walk again after the first surgery and I promise you, I will do everything to gain as much mobility back in my left arm again. I like my arm WAAAAAAY too much to give up on it. :) Now - touch the top of your head with your index finger. Are you doing it? Ok, that is the range of mobility that I will have after physical therapy. I don't kow how long it will take to get there, but I don't care. I can handle that. SO I won't be able to fully raise up my left by my ear - that is why man invented ladders. :) And I do have my right arm....better learn to embrace that one more! I do feel like I am becoming more and more like the bionic woman. That's OK. I will have one heck of a powerful left arm after all of this! And more importantly, it will leave a clear margin, one that would remove that pesky bone tumor. This is still the same cancer, ASPS. This type of cancer does not follow the rules so much remember? No stages, slow growing, not real active, moves where ever it wants through tissue, bone, and blood. And while this has been there for a year, it was very hard for anyone to see what it was going to do until it started coming out of it's shell so to speak.

This is all we know so far. I know that more chemotherapy and another surgery will be in my future because of that little stinker of a tumor that must have been playing hide-and-seek when I had lung surgery in December, but we will cross that bridge when we get there too.

Stay Positive. Sean and I are and we know that everything will work out. We are willing to do what we need to so that we can get to be parents and so I can hang around for another 60 years. Even if it means that I become the Bionic Woman!

Positivity Is Power!

Surgery Update Part 2

2011-01-14T05:19:00.004-06:00

Hi Friends and Family!!

I wanted to send you an update. I am feeling well and very ready (or rather stir crazy) to go back to work. I will be back next week, but then I will be out again the following for the second and FINAL surgery. This will be on the 26th and I will be there all day on the day before for tests. They will do the exact same thing as they did to my left lung, only to my right lung this time. We were hoping that the doctors would allow us to do the second surgery in May and I was excited that they approved for me to come back to work at the 4 week mark. SO we had all of the proper paperwork filled out and my disability done with notations of the surgery being done in two parts. But we didn't know that the doctors would be so pleased (really this is true - ecstatic with my progress really) with how well I recovered and that they would be super excited to operate on me so soon. Yippee Kye Yea right?! They really like to do the two parts 6-8 weeks apart, but we were still hoping that I would be able to work more and then have the other surgery closer to summer or in the summer. After much mulling it over I have of course accepted this as most of you know how stubborn I can be. This is really okay with me; not dragging it out and being NED soon soon sooner! Since we have the paperwork (disability and FLMA) filled out the way we do, I will be back at work for a week and then out again. I hope that was less confusing writing it all this way. :-) I worry that this will be confusing to the kiddos, but I hope that there is a special way that you have been able to sort of explain....Just think; soon I will be what I can say, cancer free and get to just enjoy a normal life of no chemo or surgeries, or radiation. Yippee!!

I have been wanting to tell you that Team Positivity is Power is back again for Relay for Life. It is on April 29th. PLEASE please please go to www.relaygalveston.com and find my team, POSITIVITY IS POWER. I would be so happy if you showed your support by joining my team AND or making a donation under my name. Each donation adds another smile as I walk for so many who's lives have been impacted by cancer.

HUGS TO ALL!!

Smooth Sailing

2011-01-07T21:27:00.004-06:00

“So how ‘bout that 4 day 3 night cruise?” Sean asks as we pull on to our street. I smiled as I said “You are right”, “This time around was smooth sailing.” At least compared to the first surgery I had. Where as I was nervous and quite anxious before this surgery, the feelings have been replaced with excitement and readiness for the next one. The left lung resection was completed in about 2 hours, open to close. They made nearly a 7” inch incision at an angle below my left shoulder blade. After deflating my left lung, Dr. Swisher, my surgeon, used a staple laser to cut out the tumors. The tool punches out the areas where the tumors are and makes a little ring around each tumor as it clears out the areas that the tumors were immediately touching. There turned out to be seven in all and Dr. S was not only extremely pleased, but also incredibly confident that he took everything there was. Then they inserted a two-foot long chest tube in my side and filled a ‘bag’ inside the lungs up with water. When I awoke, I was pretty sick from the anesthesia but I remember seeing my smiling husband and my doctor. Surgery had gone well. Now all I had to do was heal. My first thought? Well my Aunt Joanne, a survivor herself, had said “Walk when the doctors tell ya.” And that is exactly what I did! I did all of my breathing techniques from coughing to inhaling while Sean and I watched the flat screen full of free movies in our private room. From Toy Story 3 to Iron Man 2 we laughed and healed. Your emails, notes, calls, flowers, and visits kept us STRONG and full of positivity. Sean and I were at ease and Sean was nearly at home with his cute jokes that he knows can make me blush a near brick red color. Dr. S and his wonderful team came in to visit a couple of times and told me that I was such a STAR patient that he could just operate on me all the time. Hee Hee…no thank you! He will get to do my right lung, but that is it. My library needs me; my family and friends need me. And I need to get back and see my sweet happy students, and family and friends!! But I knew what he meant. I think he is pretty awesome too. When asked to show them how I can blow out through my airway and also cough, he said that I had very strong lungs because I could scrunch the machine measurer thingy like an accordion. Pretty cool. And yes it is true that by day 3 I donned make up as we headed for home. Not without a series of events that happened first of course. After I showed them that I could walk a few laps around the floor every few hours and I passed the breathing tests, they pulled my Foley and then a few hours later they took out the chest tube. No, it didn’t hurt. I just took a deep breath on the count of 3 and the nurse pulled it out. She explained that when they would later remove the epidural that made me numb from the waist up, I would feel more pain. Mainly where the tube was in my side. No worries. If the fantastically awesome nurses could fix my insane itchies and nausea then I had full faith they would help me through the pain. Boy, were they right. I am still pretty sore there now, but the tissue that was cut for the long tube (allowing my lungs to drain out the fluid) will take some time to fully heal. As for my back, I am only sore to the touch and I can sleep pretty well in a semi upright position on our couch at home. The bed is still too soft for me to sink into.

It has been three weeks since I underwent part 1 of my double lung resection. I am really doing pretty well and though I was kept busy visiting friends and family over the holidays, I have been sleeping a lot. I am hoping to be completely off the Norco pain medicine soon. It works and the pain is so much better (under control), but it makes me itch like crazy and so I have to take Benadryl to stop me from scratching all over and well that makes for lots of sleepy time. Which is not so bad, but I am ready to get back to work, and back into the real world. I am being good and patient and following doctor orders, and I can tell that I am feeling better every day.

We will see the doctor on the 11th. I am excited to see him. My incision looks great and though I still get a little winded I know he will be happy with my progression. I will also have an MRI that day and see Dr. Benjamin. I don’t think I mentioned that they found a spot in the tissue in my left shoulder from the bone scan. Really I didn’t know about it when I met with Dr. B last time. Dr. Swisher’s PA told us. They did an X-ray but still couldn’t get a full picture and so we will all know more after the MRI. Dr. B made it sound like it was not a big deal really and even if it is cancerous they will probably just fix it up with some radiation. Not my words. Those are Dr. B’s. And there is really no reason for any concern at this time. As I say, we will just cross that bridge when we get there.

This part of the story is much too sweet to pass up. I was worried about how big the scar was going to be. I had been looking at it in the mirror after we got home and I was feeling kind of scared because the incision looks pretty big across my back and I knew soon enough I was going to have another to match. Sean said it was like my angel wings were being taken off. Taken off I asked? Yes, he replied. Because God needs to keep me here and this way I will blend in more without my wings. Reason infinity why I love this man so much. I hear him tell his friends that I give him so much strength, that I am so strong. But he is strong for me too and his positive energy and silly jokes always find me when I need them the most.

I am so happy to report that everything is going well and I will write more after my doctor’s appointment.

Carpe Diem! I know I will!!

I'm A Canvas

2010-12-07T18:21:00.004-06:00

I saw the surgeon at Mda today. Our appointment was at 9am. We saw him closer to 1pm and then I had a pulmonary test at 3pm. A long day and a lot of waiting, but all in great hands and great company. My surgeon's name is Stephen Swisher. Sweet. :-)
I really like him and I wanted to share some info about him too.
Bio:
Department Chair, Department of Thoracic and Cardiovascular Surgery, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX
Professor, Department of Thoracic and Cardiovascular Surgery, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX
Robert F. Fly Professorship of Surgical Oncology, Department of Thoracic and Cardiovascular Surgery, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX
Bio Statement:
Dr. Stephen Swisher is Professor and Chair of the Department of Thoracic and Cardiovascular Surgery. Internationally recognized for his contributions to the staging and treatment of esophageal cancer and innovative translational research, Dr. Swisher devotes his efforts to clinical practice and research.
Born in Brooklyn, New York, Dr. Swisher received a bachelor’s degree in history and biology from Stanford University in 1982 and a medical degree with honors from the University of California at San Diego Medical School in 1986. He interned and completed a general surgical residency at the University of California at Los Angeles, where he received the Golden Scalpel Chief Award. In 1994, he became a cardiothoracic surgery fellow at St. Luke’s Episcopal Health System and The University of Texas M. D. Anderson Cancer Center, both in Houston.
Dr. Swisher joined the faculty at M. D. Anderson Cancer Center in 1995 as junior faculty associate in the Department of Thoracic and Cardiovascular Surgery. A year later, he was promoted to Assistant Professor of Surgery. He was promoted to Associate Professor in 2001, Professor in 2005, and Department Chair in 2007.

Now why am I a canvas? Dr. Swisher wrote 'yes' and signed it with his initials underneath my left shoulder blade for my up coming surgery on Thursday, December 16th. He then gave Sean a “skin writing pen” so that Sean can touch-up when the writing comes off. Not for Sean to draw crazy things when he thinks I am not paying attention! Though he has crafted some incredulous ideas even for him. I am ready for this surgery, but I sure do have a list of things I (but I really mean Sean) will have to get done before then. ☺ Finish shopping, wrapping, start and complete like 3 weeks worth of laundry, sending out Christmas pictures…. Well the latter may never happen in all reality, but none the less its on my list of to-dos.
We will call the night before to find out what time surgery is. It will be a 2 ½ hour surgery. Dr. Swisher will make a 4 inch horizontal incision below my left shoulder blade. He will move the muscle over and go in between two of my ribs. This is the best way, because they will not only be able to see all of the tumors, he will also have an easier time getting to the nodules that are lower. I will be in the hospital around five days and then I will get to go home. There were other options about surgery, but this is really the best plan – to have two surgeries like this; one for each lung.
So am I ready? Ready as I’ll ever be! I’m excited about being another step closer to NED and I know that I am in the best of hands.

Positivity is Power!!

Path to freedom and more surgery

2010-11-16T19:02:00.005-06:00

Sipping coffee again.... but not in a green chase lounge. More like a straight back brown chair at my favorite coffee house in the world, Mod. Before my brain becomes jumbled even more in ISBNs and coding (studies) I wanted to take a minute to write about yesterday's news. Yesterday was good news. The tests results concluded that there were NO metastases and NO new tumors! YEA!! My body is basically free of those pesky tumors and the ones in my lungs are about to be gone too. I can't say too much about this because I really won't know more until we hear from thoracic surgery. I hope to hear from them soon.... like in the next two weeks. After I am all healed from the lung surgeries, we will celebrate. I can't call it Cancer Free, but I can call it NED, which means no evidence of disease. Call it what you will, but that is pretty dang close to the same as cancer free. Knowing this is a long process; I still had to be reminded by Dr. Benjamin. This cancer is chronic, not acute. And because it is slow growing, they can't declare that it's gone just cause they don't see anything. That's okay. I will take the NED label. And I am still going to be smelling the roses along the way, taking it day by day, knowing that I will have a long amazing future ahead (with Sean, a family of our own...the works), but taking it one day at a time.
Will let you know more as I find out. Thank you so much for thinking of us this past week. Keep the faith and prayers coming.

Events continued

2010-11-12T15:20:00.001-06:00

The machine for the bone scan looks like a donut. Or really more like the CT imaging machine. They have you lie down on the “conveyer belt” and it slides towards the machine. Then a screen comes down just over your face. As you slide back, you can see the monitor that shows your bones. That was pretty neat though I really had no idea what I was looking at. I could make out my bones of course, and everything looked fine to me. And though I am no doctor, I think (hope) Dr. B will say the same. The bone scan was easily uneventful which was nice, but the brain MRI was least enjoyable. The technician locked my head in a large helmet that looked more like a birdcage. Then he nicely (he really was very nice) tells me not to move, which is easy to - do that is until the machine clicks with other clicks and the whole thing starts to rattle your back and sides. I have never had an MRI like that before. It also had the usual clicks, but the plinking sounds were loud and rather piercing. Needless to say, I did not fall asleep this time. I just stayed in place the best I could for the next 45 minutes and thought about the massage I would be getting tomorrow. I just checked in for the CT scan. I got a bracelet upgrade as they say; one with a fancy picture on it…me. My drink of choice today is going to be mocha flavored. The nurse said that people are just raving about it. Frankly, I am tired of the berry/banana mix and happy to try something new. At least now I can pretend it is a Mod Freeze. It will be two bottles and two more hours before the actual scan so I am going to read chapter 13 in my book about Ethical issues and the collection. More exciting news to come later. SMILES!!

Events

2010-11-12T08:40:00.003-06:00

Ryan drew my blood as I sipped my coffee in the soft green chase lounge. And I never even felt the prick of the needle. Really. We are at the Mays clinic for all of my morning scans and everything is a little newer and bigger over here. This afternoon, we will be back over at the main building. J I am sitting and waiting for my x-ray and decided to share about today’s scans since it will be a long day of scanning. Its been a while since I have had so many scans in a day and two of them are new for me….just when you think you have had them all…there are more machines here than shoes in my closet and that is saying a lot. Sean and I munched on bacon egg and cheese sandwiches (our fav here) and he is reading the Houston paper. I wonder if I can get him to do all of my school work for me today?? Just kidding – I am not sure if his idea of weeding a collection will be eggactly what my professor will be looking for.

I have been super nervous about this all week. I tried not to be, but hard to help that. I have just felt so great these past 7 weeks. A first in nearly 3 years and who wants to go back? The positive in me knows that I will only go forward. Forward. Surgery. Forward. Finish grad school. Forward….wait for stint to come out and or begin adoption process. Forward. Not backward. Not standstill. I want them to tell the next patient with ASPS that they have a cure now. I want that patient to know the side effects and know that they will be on something that works. I feel like that will happen; like that is happening. But I am still a bundle of nerves. But I am going to keep my head high, keep smiling, and sip my coffee.

And I will write more when I can today.

Falling into the news of it all

2010-11-07T16:23:00.009-06:00

Well, we have made it. I stopped taking the chemo on September 26th. I didn't quite make it the full solid year, but I ran out early. No complaints there. However, stopping "cold turkey" style has its downfalls. Two major infections at the same time caused one trip to the Mda ER and 6 pills a day for a week. But I was already on the road to life without chemo. Before I knew it, my energy was coming back, the nausea was gone, the pain was gone, and I could eat and drink whatever I wanted without any chemo related repercussions. I have said this before - so easy to not notice what you have (even the little things) until its not an option anymore. I can't even begin to tell you...2 years of life with chemo vs. life without...I am not having to walk around on eggshells around myself. That may sound funny, but it is true. So that is what I had been doing for the last 7 or so weeks. Learning to experience life nearly cancer free and without chemo again. Just taking time for myself and my family. And those weeks have really flown by. Cause here we are already to this coming Friday. My exams start at 8am. I will be scanned and dosed and dosed and scanned all day with my last scan at 5pm. I have a chest x-ray, blood-work, bone dose, bone scan, brain MRI with and without contrast, prep for CT (which means a barium party) and then a scans for chest, abdomen and pelvis. Exhausting, yes, but we will hear great results on the following Monday and continue the steps forward. We will meet with Dr. B to go over the results. I am feeling and hoping to hear that all has continued to be great and to discuss my upcoming surgery. Surgery has tentatively been planned for Christmas holidays and should be fairly small. I am of course voting that they stick a TINY tube in and aspirate those little boogers left to be lingering in the right side of my lungs.
Waiting is always the hardest part.

Please keep those prayers coming. Though I am positively positive that the news will be great, I am still pretty nervous.

Carpe Diem!!

What is the Next Step?

2010-08-12T20:45:00.004-05:00

Writing you was the first thing that I wanted to do, but finishing this semester (grad school), trying not to drown in lamination, and readying the library has consumed my moments of freedom. And I say that in a most happy, upbeat manner. I made 2 high A's this semester and even better, I learned so much neat stuff!! I love getting to laminate. Sounds funny, but as it comes out, I keep hearing this little voice in my head saying "look how shiny". I know, weird right? :) We lost our aids for the district this year. Perfect timing for a brand new librarian, but then there is that amazing support group that is out there not letting me fall. Thank you Clare for letting me call you way too much! I know I will be great at this, but I am still nervous.
I had testing and results on Tuesday at Mda. And as I said before, I knew I would continue to hear wonderful positive things. Dr. Benjamin is pleased with what he continues to see from this chemo and so for the first time in a year, I will stop taking the chemo. That happens on October 1st. Wow, right!! I have been on Sutent for nearly 2 years and I will have been taking it every day (no breaks) at the time that I stop. You can bet that I am looking forward to days that I am not experiencing constant hand and feet cramps and 'Charlie Horses' in my abdomen that seem to go on forever. I look forward to not being sick all the time with nausea and other things. I look forward to being able to chew my vegetables and not drink them through a straw. I'm excited to gain my energy back so that I have time to see friends too along with my studies, family, and work. I know you think I am busy already, but that is my personality. I never was the type to sit around for any period of a time.
So after I stop taking the chemo, I can't go crazy. I will have extensive tests (bone scan, brain MRI, CT -chest, abdomen, pelvis) 6 weeks after. If Dr. B is pleased (AND HE WILL BE) with the fact that there will be no sign of growth in my tumors or any new tumors, then we will begin discussing surgery to remove what is left in my lungs.
I won't know exactly what he plans to do until after we meet with him in mid November.

Your prayers and positive thinking is working! Keep the prayers coming, please. Thank you so much for your continued support.

Carpe Diem!

Summer Heat, Summer School, Summer News

2010-06-08T20:09:00.004-05:00

So much going on and so little time......
I have been busy busy busy....will that ever stop...hmmm.....probably not. :)

First things first...I meant to get back on here and tell you that our team, Positivity is Power, raised $6,212.16!!! Wow!! Please let me thank you again, for if it weren't for you....you made this happen. Thank you!

So what has happened since the last time I posted?
My brother married his kindergarten sweetheart. It really is like a fairytale with a most happy ending. They are in Spain for the summer and though I know they are well and happy, I miss them so very much. Along with that, I got to spend the most fabulous wedding weekend (aside from my own wedding of course) with my other brother, Nick, and his wife Rachel and my sister, Janelle. If you are wondering where these two sibling popped up....Remember that Andy and I were adopted. Nick and Janelle and Andy and I have the same birth mom. No, I don't know her (my choice), but I do get to share my time with them and I count my blessings for that. I am hoping to see them all again this summer. One weekend wasn't enough time. I miss them a lot!
I accepted the library position at my elementary school and was accepted into the UNT masters program for library sciences. HUGE I know! I am so very excited about this. I started classes yesterday and was feeling a little overwhelmed because they are all online, but there is such great communication already between the teacher and students that I feel much better today. I had to start another blog post for school on my blog. Throughout the course I will have certain questions to answer. The first question was about technology...wow...just how much I don't know yet amazes me. Always learning! I had also learned recently that adopted kiddos in Texas (there are some special circumstances for this) can attend Texas colleges for free. All I need is a copy of my adoption papers.....hmmm....where are those adoption papers? I have a very good friend at the court house helping me with this and I really hope they can find them. College for free would be the icing on this already perfectly delicious cake.
I also started my art camp today. We had so much fun. I had taken them to the Museum of Fine Arts to gallery sketch. They kept saying I was a great tour guide. So sweet!
Hmmmmm...what else? I am still fighting and beating this cancer!!! WHOOO-HOOOO! I see Dr. Benjamin in August for testing and results. And I am sure that I will continue to hear the most positive news. Keep saying those prayers! I can really feel them.

Carpe Diem!

The First of Many Toasts

2010-05-06T19:48:00.003-05:00

Are you sitting down? You aren't driving while trying to read this on your iphone are ya? You need to pull over. You need to be sitting down. Don't hold anything breakable. Don't....oh okay I will get to the news now. I have the most happy news to report!! I had tests this morning at MD Anderson and we met with Dr. B after. He said that everything still looked good.....
The news gets better....
It has been a year and a half of Sutent (chemo) so Dr. B went back and compared how my tumors in my lungs looked from then to now. AND HE SAID.............
MOST OF THEM ARE GONE!!!!!!!!!!!!!! GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Then I said...most of them - how many were there? More than 3 he answered, but only three were significant. Then he said of the few left, that they showed signs of shrinking and and a couple had only changed shape (which is not a bad thing). This is the first time that I have heard officially that the Sutent was working. And though I knew the words "Cancer-Free" were in my future, I have a better time line now. The tentative plan is to continue the chemo daily for at least another year and then if he is still very pleased, then they will remove what is left out of my right lung. I am so excited!! Naturally! And I bet you are just bouncing up and down in your seat as you read this too. Peeps, your prayers are being answered. If you can remember what Dr. B first told me about having/raising children, then you will know how important this next question I asked him was. I asked if this meant that I could have/raise children when I was near 40. AND HE SAID maybe even before then. YIPPEE!!! This proves what I have believed in all along....that I would get to be a mommy and that I would live to see their children grow up too.
I know there is still a pretty lengthy road ahead of us, but this news was like getting a brand new car to get us to that finish line.
Even better, I don't have to go back until August. He has asked me to keep watching the nose bleeds and I am going to be logging it down in a journal. And as long as I can continue through the other fun side-effects, I can stay on the medicine. That is great news too, because each break makes it harder for them to see what the tumors are doing. And I want them to have the best information I can give them.
Did I mention how super all of this this is!!
Thank you for not giving up, for not giving in, for not letting go. After all....POSITIVITY IS POWER.
Speaking of...Relay rocked and I will be writing again once I get the results at our last team captain's meeting on Tuesday. So tune in for more marvelous news to come.

The End Result

2010-03-08T11:35:00.003-06:00

I'm a little late these days on writing....hopefully you have already heard that my results from my last tests were fine. I really didn't hear anything different. And we all know no news is good news!! I am content with this. Though no exact date has been given yet, I will be back at MDA in April for new tests.
I want to be cured so to speak and move on as much as you want me to also, but please be patient and understand that the time for that is in my future. I can't tell you when it is, but it's there. We will get there!

Thank you so very much for donating to the American Cancer Society!! I am excited about Relaying for you, me, and so many others on April 30th. If you want to come join me for a lap or 2 come on out!! Please visit the Galveston site when you can at when you can. Our team name is Positivity is Power. I am feeling the positively positive power!!

Carpe Diem!!

Resting. Healing. Smiling.

2010-02-06T21:10:00.003-06:00

Today has been a good day. I didn't have art classes because it is Mardi Gras, but I think the day of rest (if you can call it that) has been good for this little person. I think my mind is so much stronger than my body and some days my legs just can't keep up. Funny how it works like that. I have spent the day at Mod Coffee Shop. I have made a little nest on this comfy green couch in the corner. I have graded my school papers and completed 2 art pieces. Not often that I take the time to sit in my favorite coffee shop and paint all day.

Time. Well that is something I have more of these days. And I have promised to not replace the availability of this time with anything. I had a tough decision to make last week. To let go of some extra curricular activities.... Easier said than done. I loved tutoring and I have been working with those students for over a year now. Health and healing being more important, I had to let it go. Not say good bye, just let it go for now. Not being able to take chemo breaks, my body has reached its limits. Resting. Healing. Smiling.

Relay for life is here!! I have been getting ready for the big day on April 30th. I have been raising money for the American Cancer Society. The total so far is $1615.00 that my team has raised!! I am so excited and truly thankful!!! You are helping me fight back. Thank you so much! If you haven't seen my page, please take a peek. Please join! Please donate!! I know times are harder this year, but the future is upon us and I see a light at the end of this tunnel. I'm going to make more birthdays. I relay for me. I relay for my family and my friends. I relay for the cure. Cancer doesn't sleep. So help me light the way through the dark today.
Visit www.relayforlife.org Team Positivity is Power

I have tests and results on the 22nd of this month. I am sure that while I won't hear much for change, it will remain to be a most positive outcome. The road to recovery is slow, but this turtle is going to make it to the finish line every time!!

A New Year of Birthdays

2010-01-18T10:17:00.015-06:00

Happy New Years! New Years Resolution.....hmmmmmmm......keep living and smelling the roses....continue to take it day by day....I know I can think of others to do too, but I like these best.
I just spent an hour changing my page. Are you laughing? That's okay. I am proud that I remembered how to change it.
November and December were pretty eventful. I sold 7 pieces in my first Art Walk! That was fun. I learned a lot that day. I will do it again. In fact, I hope to sell more at the Evia Farmers Market. Mark your calendars for March 28th!!
I saw how the power of positivity and prayer can transform one's outlook when Michael collapsed during the San Antonio half marathon. What a fighter he is and continues to be. And not just him, all of you surrounding him fighting for him. And look at him now....every day is a positively new day for him.
Thanksgiving, Christmas, and New Years all came and went. I enjoyed the food though I paid for that later since none of it was on my chemo diet, but it was worth it. Family, laughter, happiness, new and old loves all together. I feel so blessed to have the memories old and new in my heart and soul.
December 28th brought a new style of "hospital lounging". With Sean working that day, the initial panic of him wanting me to move the appointment so I wouldn't be alone...well I reminded him, I would never be alone. I have family all around me. All of you. So Jen, Joe, and Andy accompanied me. We brought along the game Sequence and Mexican Train Dominoes for this was going to be a long day. In the past 3 years, I have learned that I can really relax before going. I know that no matter what happens everything will be okay. He has a plan. And it DOES include me living. So rather than going to bed super early (I can sleep through every test and in between ya know)we all stayed up in Houston at Joe/Jen's aunt and uncle's. We roasted marshmallows and played Rockband until our fingers hurt from strumming and our sides hurt from laughing. Memories. Life is not fully lived if you forget to live in between.
The next day started at 7:15 with labs and an x-ray. Then we settled down by the white gazebo on the second floor.....where we remained for the next 12 hours. No puzzle working for us that day. We visited with others and I "braceleted" new friends. While I drank 2 bottles of barium (my berry/banana concoction), we played Sequence. We weren't loud, but we weren't quiet either and something you could hear from us that isn't so common there was our laughter. Happy to be together no matter how the new memories are made. Just happy to make them each day. I had chest/abdomen/pelvic CAT Scan and then I was off to......EAT!!! So hungry by that point. Then it was time for the MRI. Learned something new about that...Jennifer, who is practically my sister n law (always wanted her for a sister!!), was able to sit in the room with me. They gave her a pair of ear plugs and for the next 45 minutes she talked to me and would dance to the clicks. The test is broken down into several different scans of varying length, usually around 3 to 5 minutes each. The scans are very LOUD and rhythmic sounding. Each scan sounds somewhat different from all the others. They range in sound from a jackhammer, to loud buzzing, to high pitched sirens. Despite the intensity and variation of noise many patients fall asleep during the scan. Jennifer didn't believe that you could fall asleep during this but even she was out for a 5 minute interval. I am glad she was able to be apart of that with me. What an amazing experience.
At 4:15pm I checked in for my 5pm appointment with my oncologist, Dr. Benjamin. The lady at the desk gave me a buzzer like you get at restaurants and also wrote down my cell number. That way we could stay over at the gazebo area with its couches and sunlight and uncramped space...an area not full of people nervously awaiting results. At 8pm we still hadn't been seen. I had a funny feeling in my stomach and left the group to go check on things. When I got to the waiting area, the lights were off and no one was there. But I knew that Dr. B. and his nurse Mara would still be there. They never seemed to get out of there before 9pm. Too busy making miracles happen! I went to the back area (3 years and you get pretty comfy around there) and I found them. They had no idea....the lady at the counter never passed my number or buzzer info on to them. I don't think she will make that mistake again though. :)5 minutes later, we had our results. Everything looks fine he said. All organs are good and though I need to continue to watch any tummy issues and nose bleeds (thinning of the vessels) things are fine. He also said no chemo breaks. We had asked if I was to be on it every day of the year or if breaks would be good. He said no, no breaks. I can't tell you more. We don't know more. What we know is that he is still happy with what he sees, no matter how little the change appears to be each time. Though 3 years later, there is still no new growth. I am most happy about that. Because that means another birthday!!! Speaking of birthdays - Friday, April 30th is Galveston's Relay for Life event. The theme this year is Celebrating Birthdays!! I really really really want you to sign up to come. You can join my team, Positivity is Power, or create your own team. It really is so much fun. There is no training required for this. It is a night of fun, games, food, memories...and of course walking the track. The more people that sign up and come, the better the night will be. The more money we raise, the more lives we save. Did you know that 97% of your donations go to the American Cancer Society funding. Not to paychecks...not to events....not to travels...but to the CURE! No other organization can truthfully say that. Here is the link www.relay4life.org Once you are there, look up my team, Positivity is Power. Then click on the link "join". I have already raised $200.00!!!! Thank you Gabby, Kolby, Bobby and Cookie!! I am so excited!! And I am hoping to make it to my team goal of $3000.00. Please join me this year. Please help me stay awake all night. We relay at night because it's in our darkest hour that we feel the most alone, the most afraid. With all of you around, I am not alone nor am I afraid. So come, be with me. Help me fight to help me and so many others make it to another birthday.
February 22nd and 25th I will see the doctors again. More tests and my favorite.....a visit to the urologist for a stint exchange. Till then....
Carpe Diem!!

Saving...from a song and a dance for you

2010-01-18T07:57:00.000-06:00

I know that I haven't blogged in a while and I have great stuff to share. I will soon.....perhaps today. I am saving old blogs right now. I had done this once before but then a "bug" entered our computer and "ate" all its memory this past summer. So I am saving it all again. Thank goodness for my space account or I would have lost them. And in the process I found this song I wrote. It's from the "Sound of Music" and I wrote it when I was on the Yondelis 47....that little Sea Urchin (chemo). 2007 seems so long ago. Three more birthdays I have had since then. And looking forward to the next. Carpe Diem!!

Valet parking and coffee and soft chairs for sitting

Puzzles and free mints and internet visiting

Dozens of doctors poking and prodding

These are a few of my favorite things

Aquariums everywhere and people in masses

Pain Meds and green gowns

And going to CVC classes

IV'S, wheelchairs, and machines with loud dings

These are a few of my favorite things

When the Nausea begins to peak

When the Nuelasta makes you weak

When the headaches make you go mad

I simply remember my favorite things

And then I don't feel so bad

Yummy dinners and phone calls and good company

Long and short visits of loving sympathy

Movies and flowers and warm blankets they bring

These are a few of my favorite things

More pains, confused brains, and no need for sinnin'

Achy bones and sureness that my hair is thinnin'

And I won't mention my pale, shrunken frame

When I remember my favorite things

When the joints ache

When the tears break

When the tiredness appears on a whim

Then I remember the great life I have...

And then I don't feel so bad!!!!!!!!!

Moments Like These

2009-11-13T23:56:00.000-06:00

I love when I learn something new! Don't you??

Things I learned (I would say today, but I keep learning every day!) :

1. How to create a new blog background (Thank you Katy!!)

2. Each time I start the chemo, life with Sutent gets a little easier.

3. My willpower is stronger than I realized.

4. I love cauliflower...cooked not raw.

5. How much I think about my new niece is astonishing!

6. To remember that in each stride I take I am improving.

I started the Sutent again on Sunday, November 2nd. Considering how life with this chemo has been going I felt super positive that making the adjustment from break to chemo would be even easier than the last time. Wouldn't you know that my spirit has proved me right yet again! I am feeling good while living in the moment. As for the rough patches....I have limitations. I am still getting used to them, but I am accepting it.

Visualize with Sean and I - see the Sutent Warriors attacking the little ASPS tumors. I truly believe that each day they are doing something great. Which is good because I still have a lot of living to do with all of you!

Still no word (not that I am calling and asking head-quarters) from Dr. Benjamin's office about when I will see them next. I can feel a December appointment full of Banana/Berry Barium tests coming, but I will let Mda schedule me. No need to ruin my turkey taste-buds just yet.

I am still getting ready for my first ArtWalk. I am really excited about it. I have already sold 3 pieces this past month!! I would love for you to come. It'll be in the evening on Saturday, November 28th at Gracies on the Strand.

Thank you for your continuous prayers and support!

CARPE DIEM!

Feeling Fine

2009-10-26T20:46:00.000-05:00

Days of rain and I am still feeling good. No headaches or tummy aches or nausea. No sleepless nights or special diets.

I am feeling good. These past two weeks I have not been on the chemo because I really needed to stop, take a break, and let myself heal. Months of this every day can really start to wear on you. My poor feet were beginning to take a toll too. One might also agree that work, art classes, tutoring after school, and volunteering might make this harder on me too. One may wonder how I have any time for Sean or my friends and family. They come first. Then work. Then everything else. Though if you know me I know that means I have seemed to have left myself out of the picture again. I really do better though, not focusing on myself too much. Yes, I know I need to take care of myself. And I do. I accept help too when needed. So this break has been most positive.

I would be lying if I said I was looking forward to starting chemo again on Sunday. BUT I am looking forward to targeting those little monsters and letting the medicine work its magic.

I do not have a date set on when I am to have tests and results. Dr. B is out of the country until the end of this week. I will keep you posted.

Thank you so so so much for your continuous prayers. It helps keep me going when I am not feeling my best.

Rain or Shine - CARPE DIEM!!

Enjoying The Fall Weather

2009-10-10T13:33:00.000-05:00

I am feeling pretty good this month. I am still on the same chemo. My results are still positive. I don't have a date for my next appointment, but it shouldn't be until November. So I am just trucking along. I'm working every day and still teaching art on the weekends. In fact, my personal art is going to be at Gracie's for the November 28th Artwalk. I am so excited!!!
Sean and I are just taking it day by day and enjoying the simplicities that life has to offer. I think that is the easiest thing you can do when life is full of possibilities. I see a hopeful, full of "every thing great" future, but until then, I am making the most of the super now that I am in.
I also do not have to take Lyrica for the nerve pain anymore. My knee feels a little tight now and then, but I don't notice it for the most part and I am still walking pretty well. I can almost kinda run too!! I am getting excited about that!!

Perspective

2009-09-10T21:13:00.001-05:00

I came home to an empty house around 8pm smiling. Not smiling because it's empty! Sean and Priesty are working out of town this weekend. But smiling because I could feel the accomplishments. I felt this feeling all over....I had heard from my doctor and gotten good results, jr junior leaguers training event was amazing tonight, I had a wonderful day with my students today (though they are pretty wonderful every day), my art is going to be in Gracie's for Art Walk, I'm teaching art lessons, and I didn't have any more laundry piles (well who's looking in the hamper anyway)....and the more I thought about everything the more I smiled as I realized that it might have been some time since I had thought about all the positive things in my life. I am taking chemo and I am still moving on. Still striving for a cure. Still living life, still walking on my own, still smiling. I knew that I was also smiling because I hadn't stopped to think about it more and I knew I needed too. Things can pile up on you. Kind of like dirty laundry piles. You might have a pile of work, a pile of volunteer agendas, a pile of cleaning, a pile of medical bills, a pile of regular bills....and before you know it those piles can be so overwhelming. What I hope that you are doing now is thinking about all the positives in your life. And if you can't name 3 right now off the top of your head then you need to look at your bracelet that says Positivity is Power. And if you don't have one of those bracelets, then you need to call me so I can send you one.
I had labs on Saturday and talked with Mara, Dr. B's nurse, today via email. I had had a phone conference with her on Tuesday about the labs, but of course I forgot to ask any and every question...just a few important to name -what were the results of my lab work, why do I have to see Dr. B next week (this was unplanned), am I having more testing....you might be wondering now what was Amanda saying to her on the phone if she didn't get any of this information. I had only been thinking that she would tell me to continue chemo into month five because my levels were good. But her first question sent me to la la land. She asked if I was still on chemo. Or rather what I found out later was that Dr. B wanted to know if I was. And what I later found out (when I talked to her again) was... he wanted to know if I was still on chemo because my labs looked really good. He knew that I had been sick all of last week from some kind of cruddies, but my levels were still fine. That is awesome! And the reason he wants to see me next week is because he will be gone until October 25th and he wants new scans for chest, abdomen, and pelvis. OK. This is good. So on Thursday the 17th, I will have my stint in my ureter changed out, have x-rays, labs, full body barium swallowing CT scans, and meet with Dr. B.
But for now, I will return emails, make coffee for tomorrow, pick up my sweet little Chopper who is asleep on the floor next to me and go to bed! Oh, and take my chemo of course. After all, chemo does a body good!

Looking Great

2009-08-12T22:06:00.000-05:00

I am laying down. Compliments of my sweet sis Jeni for letting me use her laptop right now. I am thinking that if I invested in one of these I might have told you sooner that I saw Dr. B last Tuesday. Yes, Last week! And it was super great news even. He said that my labs came back great. He looked at me, smiled and said "You really look great." And then he said that.....he tumors are shrinking once again. YIPPEE!!!!!!! Shrink away little mongrels! Next time not only do I get to go for labs anytime on a Sunday, he will call me with the results. That will be on September 6th. How awesome would that be if we just continued that path...good news, labs on Sunday, then doctor visit via phone conference? I am so excited to see that we have already come this far. I am into month 3 and though I am busy with JJL, setting up my classroom, baby shower galore, teaching art classes, and tutoring I am finding plenty of time to take breaks and rest.
As for energy or increasing lack of... Dad suggested that I eat more potassium and drink more electrolytes and Jess helped me find some good things to add to my diet at the store. I think this will help give me the strength I need to keep fighting the good fight. I had noticed that I was tiring out much easier these days so between the food and the rest....I should be moving along in the right direction.
Well, It is officially time for me to stop fighting the closing of my eyes.
Rain or shine tomorrow, Carpe Diem!

The Journey Continues

2009-07-07T13:59:00.001-05:00

We met with Dr. B today. I think we got out of there in record time.....our parking fee was *only* $9 and we saw Dr. B at 10ish (our appt time was 9). That's good! These appts usually involve a much longer wait. I don't even want to think about what he has to say to the patients he sees before me. Say an extra prayer for Jackie. I met her in the waiting room this morning and she has Dr. B too. She was waiting to be admitted for round 2 today. She has MFH Sarcoma. She was diagnosed on Mother's Day. She's a mom, a wife, a friend, a sister, and even an attorney for Walmart in Arkansas and she's a fighter (a survivor). She is going to make it - I just know it!

Dr. B said the results showed that my tumor was "not better and not worse....just fine". He went on to say that he couldn't say much about my tumors. He said they are so lazy, dormant, that it is truly hard to see the activity level. They could be dead and that would be awesome!! We really need to stay on the Sutent and wait and see what is happening to them. It will take time...I have lots of it! We will still continue this chemo even after he is sure about those tumors because we need to make sure that nothing else grows. He said that he really needs to keep watching these tumors. Remember, they grow slow and they are shrinking away slowly too. He also decided that I don't need to take a break from the Sutent. I will continue to take the same dose every day with no stops in between. I will also start seeing him every four weeks so he can see how I am doing and how the tumors are doing. I will see him again after the 1st of August.

Thank you so much for your prayers! Keep 'em coming!!
POSITIVITY IS POWER!!!!!!!!!

2009-07-06T12:02:00.000-05:00

So I found yet another perk about Mda....when you do not have a working computer at home, use the one at Mda! We have a virus on ours and we haven't been home much to fix it. The whole thing is a mess right now, but I'll work on it some day this week for sure....unless I have any volunteers to come sit at my computer and talk with Microsoft, Norton, and Comcast to fix it.....no - no takers to do that and I understand completely.
Anyhoo....here I am. It's testing day. I had labs and x-rays earlier and now Sean and I are hanging out till our 2:30pm CT appt. I'll come again tomorrow morning to see Dr. B for the results. I feel like he will say that everything is running on course as it should be. I am almost finished with the 1st month's dosage of Sutent and hopefully my white blood cell count comes back great so that I can continue on to the second month. I am positive it will!
Speaking of Positivity is Power, let me tell you about camp!! For those of you that were there with me....ice cream and cake, ice cream and cake, now slip slip slip slide, slip slip slip slide......Needless to say, I had the most amazing journey at Camp 4 All with the Rainbow connection. You really HAVE to go to www.rccamp.org to see this. The staff was amazing (but camp 4 rocked it out!!!!), and the kiddos were incredible! The rainbow connection just celebrated it's 25th year of taking kids 6-15 that have cancer, blood disorders, or are siblings of those that do. And the camp is the coolest ever!! Thanks to so many amazing sponsors, these kids get to have one of the most amazing weeks of their lives. And most of them come back year after year....and I met 2 of the sweetest counselors that were campers then Jr counselors and now counselors! Along the way, I made some of the most amazing campers and counselors and made some pretty neat new friendships. When I say that I can't wait for next year, I mean that I really can't wait for next year. Janis asked if she could give out my Positivity bracelets to campers and staff. WOW!!! So every time someone was "caught" stargazing....just kidding....being or doing something positive, she would give them a bracelet and yes, by the end of the week, everyone had one!!!! I really hope they will do that next year.
Will email again tomorrow after I see Dr. B.
Carpe Diem!!

Kumbaya

2009-06-11T06:38:00.000-05:00

Morning! I can tell it's going to be another great day in the neighborhood!! I'm up pretty early drinking coffee. I'm usually up early, but I am not usually awoken to a charlie-horse in my left calf. Ouch! I had to fall asleep with cramps in my right foot last night too. I can't assume this is the doings of chemo....it might have been the huge pecan pie with icecream and whipped cream that I helped Sean and Nona eat last night. I am a good helper when it comes to finishing desserts. I have to admit that being on chemo will make you scrutinize every abnormality and often has the makings of a hypacondriact. So if it happens once in a while; no worries. Let's HOPE that experience is only on occasion. I did forget about the terrible, vivid dreams though. Whew!! I am glad this one wasn't true because I'd have to tell Sean that someone stole our mower out of our garage again.......Never mind all that. I am happy to be up. And I owed a completion on my last post too. Did you know that Relay for Life and The Rainbow Connection are both celebrating 25 years?! That is amazing!!!!! The Rainbow Connection has a camp and I met some pretty neat ladies when I was attending the Relay meetings, Heidi, Lisa, Janis, Christy and they invited me to be a volunteer counselor at the camp this summer. Of course I jumped at that chance. I loved camp as a kid (Heart of the Hills - go Shawnee Power!!!!) and I always wanted to be a counselor, but I just never had the full time. Needless to say, I am super excited!!! This camp has the kiddos ages 6-15 from Utmb. They either have cancer, blood disorders, or are a loved one of one that does. Here, they are just a camper. Doing things that campers do. And because people donate every year, they get to go the whole week for less than $50! I love it! As I write this I am envisioning myself wearing all white like we did on Sundays at camp Heart singing Kumbaya(cum-by-ya)......check out this site http://www.rccamp.org/camp/ Camp Location: Camp for All in Burton, Texas. Camp for All is a facility built especially for individuals with special needs.
Camp Activities: Fishing, swimming, canoeing, archery, riflery, horseback riding, arts and crafts, challenge course, sports, all-camp dance, talent show, campfires, music, cook-outs, nightly activities, awards and many other activities.

Countdown -2 weeks away!!!

So many of you wrote me back from yesterday's post. Wow! I love you all!! Thank you so much for your incredibly sweet, kind, loving, inspiring words. It really MEANS so much to me always and every time. I have saved every sweet word. It helps me tremendously to look over those encouraging words on those days that I am not feeling my best. Thank you so much.

Stopping and Starting

2009-06-10T08:09:00.001-05:00

Over the last couple of months, I have probably sat down to write no less than 9 times. But I either felt like I had nothing to say or that I had so much to say and not enough time or energy to write it. Now I feel like I have plenty to say....Those of you that know me pretty well know that if you haven't heard from me that I am doing well. Really, its not much different from you...if you aren't calling me regularly or popping into my classroom...if you don't work right across the hall from me....you aren't going to know all the nitty gritty details. Those details are small ones. I am still feeling so blessed. So what that ALLLLLLLL of my hair turned white. We dyed it. I can't eat much at one time or anything spicy, acidic, must be careful, blah, blah, blah. And I am a master of fatigue and nausea most days. And I guess I'm going to sit in front of a special light for the rest of my life so that my skin will feel healed. If that's it....I can handle it, and good thing too since Dr. B says I'm likely to be on this chemo for a long time. Long time....I thought he meant a year or 5. No, he means a long time. So I am not going to think about more than five years from now. I can't stroll through life focusing on five years from now when tomorrow can change everything. Day by day. Day by day, I say. Dr. B doesn't actually know how long I'll be on this. I just pray each day that it is working and that it continues to work. I honestly don't care as long as it does and I get to live well past retirement. Remember, I have plans. I want children (PLEASE call me and I'll come play with yours!!! I love them!) I want grandchildren, I want to see my friend's kids grow up. I am getting ready to be an Aunt and I want to see this little munchkin get married, have children too. I want to enjoy my teacher retirement....darn it they take enough out of my salary each month as it is. :) So, a long time on chemo = a lot more memories. Interesting, I am wearing my survivor shirt that I got from Relay today. That's good I think. I need to tell you about Relay for Life (how it went) and about camp.
Let me first say that I am feeling like a survivor every day. And I started what we created to be Round 3 last night. So far, I have been on chemo for 2 months at a time with 2 week breaks in between. Dr. B said I can't just stay on it, that my body has to heal some. My white blood cell count was 2.2, so we stopped to take a break. Worked out fine since I had literally run out of chemo and had spent the past two weeks working on getting it. See with the very first chemo that I was on nearly two years ago, I saw Dr. B before I actually took my chemo and I took it there (remember chemo in a bag girl). But now since it comes in the mail (go UPS), it's different. I don't see him before each dose. And they are so busy over there, naturally, that its hard to connect at times. Ok, and I am super busy too. :) I don't have another doctor appointment until July 6th. It's been a month since my last one and all that was said, I already mentioned above. I did also see plastic surgery and I got my "graduation papers", though I might go back and have fat taken out from another area (don't try to donate, I have plenty) and injected on my right side. My skin is pretty thin along that incision and I often have pain from clothes rubbing it wrong and what not. But I am still thinking about it so we will see.
Ok, RELAY FOR LIFE WAS A HIT!!!! Funny how it rained everywhere but at Moody that night. So a lot of people didn't make it and some people there had to leave, but over all, I had a blast. Our team alone raised over $2,000!!!!!! GO TEAM!!!!!! And I can't wait for next year already! I do think that a lot of people didn't know about this, so I plan to do my part in helping make sure that everyone knows more about what it entails and just how much fun (I danced the night away with my goofy steps and even won musical chairs at 3am...though I think the kid was too afraid of knocking me down and let me win, hee hee!) it is. It is amazing to see how many lives are touched by cancer in one way or another. It is amazing to see how everyone comes together under the stars and Relays. Relays for more birthdays to be had, Relays for cures, Relays for my life, your life, their life. Mark your calendars...it will be in April next year. Actual date? I'll let you know when I find out.
For now, I must go...I need to take out my famous WS Banana Nut Bread from the oven and then go meet a student for his tutoring session. But I'll be back....today. And I will tell you all about Rainbow Camp. I get to volunteer as a counselor for the cancer kids at UTMB. There they get to be a kid, just a kid having a blast at camp. It's my first time and I can't wait....look I am already rambling on about this. I really must go. I can smell the bread calling my name!!
Carpe Diem!!
Positivity is Power! ALWAYS!!!

Positive Singing

2009-04-18T09:58:00.000-05:00

http://www.youtube.com/watch?v=9lp0IWv8QZY

Good Morning! Even in the rain, it's a good morning....
Feeling good today.
A good friend, Lica, sent me this the other day and I really think its something everyone should see if you haven't already.

Talk about Positivity is Power.

Speaking of......the Relay for Life event is this coming Friday, the 24th. If you haven't visited the site and you want to sign up for team Positivity is Power 2 or to make a donation to either Positivity is Power, Positivity is Power 2, or to buy a luminaria; please go to http://www.relaygalveston.com/. The deadline to do this on Tuesday the 21st. They have asked me to speak at the event and begin the reading of the luminarias. I am honored. I just have to tell my story. I think I can do that and if I picture everyone to be 6 or 7 like my first grade class, I think I'll do fine.

So, we are into week five of Sutent. I am truly feeling good. I don't think you would ever know if you saw me. The pain and nausea is so infrequent and I am doing a pretty good job staying on a schedule...something I've never been super at. Eating is nothing exciting these days...same cereal in the morning, same PB & J sandwich for lunch, and something different but safe for dinner. Its worth it though! I think that helps a lot and so does all the rest I am getting too. I don't see Dr. B until the 12th and I am hoping that I will be feeling as well as I do now so that I won't need to take any breaks.

Love and thanks to all!

From the Daily News

2009-04-14T12:46:00.000-05:00

This left me speechless.

From the Galveston Daily News –

Relay For Life is still here after Hurricane Ike By Lisa Velasquez Contributor

Published April 12, 2009 GALVESTON — I’m a cancer survivor. I’ve beaten the odds, and I just marked 10 years of being cancer-free.This past year, I learned another important survivor lesson, as did so many of us who call Galveston home.I’m a survivor of a different kind now — there are so many of us who lost so much, including hope, Sept. 13.But we’re strong people. We didn’t give up. We began rebuilding, not just our lives, but rebuilding hopes — as we work toward the return of our beloved island.We hope for a better tomorrow. So does the American Cancer Society in its fight against cancer.Thirteen regional divisions and local offices in 3,400 communities and millions of volunteers, including everyone involved with Relay For Life, are building hope.I’m proud to support the ACS by participating in Relay For Life, the No. 1 nonprofit fundraising activity in the world, celebrating its 25th anniversary.The Relay kicks off with a celebration of cancer survivors.There are more than 9 million cancer survivors in the world today, and we honor those courageous people in our community.This year, Frank Billingsley, of KPRC-TV in Houston, will be on stage to celebrate our survivors and kick off the official first lap.The Survivor lap has always held special meaning for me.It reminds me of why I became involved in Relay: to celebrate the fact that I’m still on Earth, even after I heard those three dreaded words, “You have cancer;” also to honor my husband, who was fighting cancer at the time and lost his battle.That lap reminds me that it’s possible to inspire others through actions, that what I do as a cancer survivor may impact another person who might be beginning their fight. Never underestimate the power actions can hold to someone who needs to hear “It’s going to be OK. You’re not alone.”The most moving and memorable part of Relay For Life is the Luminaria Ceremony, beginning at dusk.Survivors and those we’ve lost are honored at this unique ceremony.Paper bags bearing the names of loved ones line the track, filled with sand and a candle.The overhead lights are dimmed, and names of those lost to the disease are read aloud.These beautiful tributes provide hope that we can find a light in the darkness that is a cancer diagnosis.Relay is a family-friendly activity, with games, fundraisers and entertainment.I’m urging the entire Galveston community — whether you live, work or volunteer here — to join us at Relay For Life of Galveston Island at 6 p.m. April 24 at Moody Gardens.It provides an opportunity for the community to join as one in the fight against cancer.Celebrate hope right here on Galveston Island.If you can’t attend, please consider a donation in support of this event.For information, visit relaygalveston.com.Cancer doesn’t stop for a hurricane. Neither can we.Lisa Velasquez lives in Galveston.

It's Been A While

2009-04-10T08:33:00.000-05:00

I haven't written anything in a while. Don't worry, the chemo is DEFINITELY still working!!! So much seems to be going on around me that I find myself "sucking it up" and trying to help problem solve for others. I have friends who have babies who are at Texas Children's and I have friends whose parents are dying and I have friends whose lives are still ripped apart from Ike. As cheesy as it may sound....they need my positivity mixed in with their own. And I am happy to have the energy to give. So I find my self going to work, going home or visiting with these friends, and going to bed.
No I have not been on Chemo for 4 months. Dr. Benjamin was hoping for that, but my little engine that can sort of steamed out for a while there. Beginning of March some weird things happened. At that point I had been on this Sutent for nearly two months and my body had decided it had enough. And I am not talking about my hair that turned white. Interesting and quite freaky, but fixable. No, my blood pressure dropped very low and my face and chest turned a pinky red and I was VERY grumpy, TIRED, and sick. So we stopped for 3 weeks. And after a few days I felt great. I went to South Lake Tahoe with family and I had a blast. I was able to sleep and eat normally....and I drank like a good little catholic would too! By March 20th I was ready to start this Sutent again. My body, mind, and spirit had truly healed and I wasn't so scared since I then knew what to expect. One day at a time, right? That's the way to do it. I don't worry about the side effects. I think if you think about them too much, it will surely happen. Positive thinking remember?
So here we are.....week 4. I love my hair. It's like brown then white, then brown. I'll have to fix that before Easter services. I can't have the Cardinal seeing that. Hee Hee. So far for the most part I have been fine. I can tell when I have over done it though. At school this week, we had ITBS testing and we also made Easter bags and dyed eggs and had an egg hunt and....and...and. So needless to say by Thursday I was wiped out. This weekend is pretty full too, but I plan to rest in between.
RELAY FOR LIFE!!!! This is on April 24th! Please join my teams. Positivity is Power and Positivity is Power 2. I met this sweet young guy (well not yet in person) named Chris Sanderson. He is so positive and enthusiastic and he was recently diagnosed with RHABDO Sarcoma. He is a police officer down here and he is still working in between his treatments. Well, he is just a joy to talk to. Kind of reminds me of a younger version of me. He is on the Relay for Life team too. Just another reason you'd want to be apart of this. Go to www.relaygalveston.com to see more info about this incredible event. Think of survivors you know. And of those that you hold a special place for in your heart for they lost their own fight. This is whi this event is for. Finding the cure. Fighting the cancer. Supporting the cause. Really, thank you so much for all of your donations and support. Thank you for wearing my bracelets too! That means so much to me!!Your power and enthusiasm is half the battle and in my "darkest hour" it helps keep me fighting.
I go back to the doctor on the 12th of May. I will have more testing to see how this chemo is working and also an MRI on my right thigh. I have these severe pains in it and the CT didn't show anything. It may be a phantom nerve and it only happens when I am on the chemo (I never once had the pain during the 3 week break). So hopefully this will tell us more. For those of you that have to drink 2 tall bottles of barrium......try mixing the berry and banana flavors. Seriously! I have had enough barrium parties to say that mixing it helps it go down so much easier.
Till then,
CARPE DIEM!

2009-02-05T14:55:00.000-06:00

Really, I must say that I can't believe I haven't written that............

THE CHEMO IS WORKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The tumors are visually shrinking. I will continue chemo for 2 to 6 more months....no breaks. Just a pill....every night....for the next 2 to 6 months.
I have been on a roller coaster. Sometimes I want to get off the ride. But I want to be cancer free. I want to continue to be cancer free! I remind myself that all the time. I remind myself that when I am rudely awoken (my body) in the middle of the night several times. I remind myself that when the pain is ouch ouch ouch. And I remind myself, when I have to rely on others to help me get through the day. However, when it comes to food......and I do love food...I wish I could remind myself so that I don't eat the things I do. Bland, bland, bland. I must focus on bland. Dr. Benjamin said I can work. I will keep working because I love what I do, I love my students, and I love feeling productive in this crazy world. I can't say much more at this moment. I will write more later. Feel free to ask me questions.

2009-01-18T08:15:00.000-06:00

Thursday I awoke before 5am with a headache. Took two Darvon and went back to sleep. When I woke up about an hour later it was still there, but only a faint trace of it lingered. So I showered and went to work. I had my hair pulled back...as I always do. Its at that weird growing back stage and that can be pretty annoying at times. My headache was getting worse as the morning moved on. I thought it was just the pony tail so I took the band out. When I went to the school nurse to have my daily Blood pressure reading and temp, it was pretty high. By the time my husband came to get me (its a wonder how he didn't get a speeding ticket) my BP had reached 170/110 and my head was pounding worse than I had ever felt in my life! So off to the ER we went.
We went to the Mainland ER. Sean was concerned that MD Anderson was too far away at this point. They took my BP and whew!! It was 206/126. Nope, not good. I told them I was on Chemo and that this was listed as a common side-effect. I am on BP medicine, but the dosage is very low. They gave me demmorrall (spell check that) and phenogren. Instantly my Migraine was going away and my BP went down. They did a CT Scan and an x-ray and all came back fine. I left with instructions to rest over the next couple of days. I have put in a call to Dr. Benjamin's office about raising my BP medicine and the pharmacist suggested that I take one pill in the am along with the one a take at night so that I am at least getting 20mg. What a scary day. And what a head-ache. I have since spoken to Dr. Benjamin and he increased the dosage. He said to really watch my BP for 48 hours and to call him right away if it doesn't go down.
I will keep you updated. Just continue those prayers.

This IS working!! Still visualizing the Sutent to be attacking the tumors.
I also ordered new bracelets. They are pretty close to the same as the ones before, but I got the band to be blue and the phrase to glow so that the band doesn't loose its "luster" so to speak. The phrase Positivity is Power glows in the dark. Why does is glow? Because....in your darkest hour....read those words and know that you are not ever going to be alone in the dark. There is always a light at the end of the tunnel, no matter how deep that tunnel can get. Always a light. I am selling them for $2. All proceeds go to the Sarcoma Foundation. Please help. I have small, medium, and large. PLEASE help the foundation.

Feeling

2009-01-13T09:48:00.000-06:00

Some days are good and some days are not so good. Yesterday was not so good, but today is better. I am 14 days into my Sutent. Still visualizing the attack against my tumors. Yesterday was a day of nausea amongst other things but today is better. You know that feeling you get after you have been feeling so sick and all of a sudden you feel better??? I have that feeling now. Its almost like a high that you get....full of peace and happiness. I can relax. I am happy. I don't like how sad I feel when the medicine makes me feel sick that day. Only 13 more days!!!

I am thankful for my team at school....not just my amazing 1st grade team, but my whole team. I don't know what I would do if they didn't look out for me! I am thankful for my mommy in law who sent me one of those funny snuggly things that you have being seeing on those info-mercials lately. Its pretty cool......and snuggly. I am thankful for my dad who keeps calling me to make sure I am okay and that I am checking my blood-pressure daily. I am thankful that the school nurse does that for me!!! Go Mary! I am thankful for my "back-yard" neighbor for whom I have no idea what I would do without her love and kindness. Her boyfriend is pretty amazing too...he even washed my car the other day! And lastly....Sean. He is doing well. He is having to put up with me. He does so well with the days of ups and downs. He is truly amazing. He makes me laugh. He makes me eat. He makes sure I take my medicine. He checks on me all the time just to make sure I am alive and kicking. He makes me feel loved.

Carpe Diem! Go out there and hug that person that you have been meaning to hug.

The ZZZZZZZ's

2009-01-07T13:43:00.000-06:00

It is almost 2pm. I think the day has strolled along and I can't think of the last time that I was so tired. Baaaam!!! So chemo has finally begun its toll. I am watching as our aid helps with the students. Its loud in here, but incredible. They are learning about the difference (subtraction) as they play banker. I should be so excited, but I am so tired. At this point I am tired of being tired....and its no where close to "hitting the hay" time! I have felt the nausea off and on too, but for the most part, it has been ok.
I know I can keep this up. It is worth it as I continue to visualize the Sutent attacking the tumors. Did I mention that the tumors no longer have names? A sweet friend of mine said that in naming them, you give energy - existence - power. No way are these guys getting anymore of that!!

Tired But Going Strong Into Day 2 1/2

2009-01-02T13:05:00.000-06:00

Wow! So I feel better than I thought I would. I am pretty fatigued and have a horrible headache, but I am at work right now and feeling pretty strong. I am even remembering to drink lots of water, eat often, and stay moisturized/hydrated. Compared to other things, this is pretty simple and quite preventative. I am visualizing the Sutent to be attacking the blood vessels that are feeding into the tumors.

Sutent in the Mail

2009-01-01T10:46:00.000-06:00

Who knew that chemo could be delivered in the mail?
I started Sutent last night. Its a red and gray capsule. It was very surreal taking it that way. It seems to lesson the blow....the fear....but in the back of my mind I know - it's still chemo. Though this time it will be the cure.
I was confused as you are probably now when Caremark (pharmacy that my insurance uses) called. Dr. Benjamin had figured that we would not be starting until late January because we were waiting on approval from my insurance. Each round last 28 days. I take one pill a day. Cost? Just over $8,000. Thank goodness my copay is only $35. There isn't much that the doctors know about the true side effects from this chemo. They know that it may increase my blood pressure, make me tired/fatigued, nauseous, and that I have to stay away from grapefruit products. Basically, a bland diet and lots of water. I also can't touch hot water. Sean is changing the temp gage on the heater for me.
So how do I feel? Okay so far. Since it can make you tired and and nauseous we decided to start last night as opposed to this morning. I slept fine and I feel fine. I do have medicine that I am taking to keep any unforeseen nausea under control. So each night I will take yet another pill. I finish this cycle on the 22nd and we will see Dr. Benjamin on the 29th instead of the 5th. Speaking of that date....I will be seeing more doctors on that day in Feb. about my stint and my previous surgery.
On a side note:
I have been thinking about my New Years Resolutions. I don't have any yet, but I know that I need to do something about my phone and email. I haven't been great about returning mail or calls since Ike. But I think of you and I know that I owe you a call or better - a visit.

Beginnings

2008-12-21T19:15:00.000-06:00

So a new year will bring new beginnings for me. New Chemo that is. You can say that 500 more times and it isn't going to make me any more ready than I am right now. Fear? Check. Unsure? Check. Ready? Check. I hardly know anything about the process and the effects, but I am ready. After all...I told God that he could have two years of my time, but then he had to give it back. March 17th will be 2 years. It is called Sutent (sunitinib). It is a pill that I will take daily so that's pretty cool. No catheter means I can stand upright when I shower and we won't have to clean it all the time either. Their main concern is my blood pressure. This medicine will attack the veins around my tumors in my lungs. I am am on a small dosage of blood pressure med now. They will increase the dosage once I start on Sutent. There are more possible side effects, yes, but we are just going to wait and see. I do better not focusing on all of the "what-ifs". Jan 6th. That day we will meet with my oncologist, Dr. Benjamin to get more information.

I feel like I have so much more that I want to say though I am really not in the mood to write at this moment. It is cold down here in my "office" and I am hungry.

Feeling? Happy to have finally started this blog on blog spot.

Excited for my brother to be coming in just 2 more days.

Elated that my Uncle called and invited us to go skiing in Tahoe in March.

Nervous that my oncologist will say no to skiing and to Tahoe.

Lucky. Simply lucky. Lucky in love. Lucky to be loved my my husband, family, friends.