I’ve been neglecting my blog since I started working again and am moving on to a “normal” life again. September 27th I started work at Ultra Clean Technology in Austin. Currently I’m the NPI buyer responsible for engineering projects. It is more stressful that I had hoped for. Originally I was hired to be the indirect buyer for all of the locations worldwide, but after only 3 days my trainer ran off with her girlfriend to Equador. She quit via text message. Needless to say it has been a crazy couple of months. October 25th I had my first post-treatment checkup with Dr. Gonzales. It went very well. She was really excited and I think really glad to have a good outcome to report. I took a bone density exam and my bones did not degrade from the chemo – YEA! We took off for Houston on Saturday, and took a field trip to the St. Arnold brewery with Sarah. We had a blast, and found a great new place to hang out on a Saturday in H-town.
Sarah in front of the brewery.
Who could resist sitting in this cool car??
Enjoying our free beers!
St. Arnold
On November 6th we participated in the Wurstride with our friends Tim and Amy. It was 100 km ride from Austin to New Braunfels with free beer and sausage at the finish line. After stuffing ourselves we made our way over to Wurstfest and shared beer while dipping our toes in the Comal River.
Still smiling at the second rest stop in Uhland.
The BEST Wurst Ride in Texas.
Tim, Amy, and Rachel at the halfway point. It was a cold morning.
Wayne, exhausted from the ride, sleeps peacefully in the grass by the river.
We waited all year for this!
Monday we headed back to MD Anderson for my final appointment with Dr. Chang before getting my expanders replaced. Tuesday I got my new fake boobies. They are smaller than the expanders, and soft like real ones. They don’t push against my ribs and make it difficult to breathe. I think I can live with these.
Saturday, November 13, 2010
Thursday, September 23, 2010
Clinical Trials
This article in the New York Times, New Drugs Stir Debate on Rules of Clinical Trials, brings to mind the brutal anguish that Cody and I experienced waiting to hear if I would receive the trial drug in my clinical trial. I was literally ringing my hands in the waiting room. Another patient noticed my obvious distress and tried to calm my nerves by telling me that she "eats a bucket of chicken" on the way home to New Orleans after chemo. On our way back to Austin I would let Cody know I was okay by asking him to stop for a bucket of chicken at Williams Chicken, just off of 290 in Prairie View, on our drive home from chemo. Hearing that I had been randomized to receive the drug, one that could help save my life, was the best news that I could have possibly received at that time. I didn't think of all the people who would hear that they had not been randomized to receive the trial drug, this article really drives that point home. At what point do we, as society, accept a certain amount of collateral damage in our "war" against disease? I'm not sure of the answer, but I do know that everyone should have access to treatment and drugs that could save their lives. I also know that as a patient I wanted verifiable studies to pour over and aid me in my decision making. Another patient that I spoke with a couple of times in the waiting room had a friend with my exact diagnosis, in the same clinical trial, and she didn't get the drug. Her tumor grew to over 6 centimeters in 3 weeks, and she was immediately pulled off of the trial and put on F.E.C. I never saw her again, and wonder if she survived. I hope so. I know that participating in a clinical trial was the right thing for me to do, and hopefully my days as a guinea pig will help save another. Would I feel the same if I had been randomized to the control group? Especially if the outcome had not gone as well? Maybe on our next trip to Houston I'll stop for a bucket of chicken.
Tuesday, September 7, 2010
Rainy, Rainy Tuesday
Today we woke up to rain and cloudy skies. Thank you tropical storm Hermine. The rain is really nice, very slow and has cooled us off for a nice change of pace. It makes writing and working on finding employment an easier task. My interview last week was a bust. The recruiter called me over thirty minutes late, then proceeds to tell me that they filled the position the day before. There had to be a better way of communicating this information. Now I’m working on preparing for an interview tomorrow; an indirect buyer position with Ultra Clean Technologies. I’m also hard at work preparing my state application for a position with Texas Parks and Wildlife, and an application with the University of Texas. It will be nice to get back to work and begin to get my life back in order after this horrible year.
Cody and I had a nice three day weekend. On Saturday we attended the North by Northwest Anniversary Party, benefiting the Breast Cancer Resource Center. Redd Volkaert played and we had some much fun dancing, we danced to almost every song. Monday morning we were going to head down to the Austin Triathlon and cheer everyone on, but there was a nasty rain shower right before we left. So we decided to go to the Tour de Austin bike races at the J.J. Pickle Research Center.. Those people are crazy. They race in huge groups, going really fast, negotiating tight turns. Amazing more people are not seriously injured at those races. We spent the rest of Monday watching Anthony Bourdain: No Reservations marathon, and making homemade pizza. It was a great weekend. It was so hard this morning to watch him leave for work. I am alone again in the house. Some days it is nice to be alone with your thoughts, but I have been alone so long…
Cody and I had a nice three day weekend. On Saturday we attended the North by Northwest Anniversary Party, benefiting the Breast Cancer Resource Center. Redd Volkaert played and we had some much fun dancing, we danced to almost every song. Monday morning we were going to head down to the Austin Triathlon and cheer everyone on, but there was a nasty rain shower right before we left. So we decided to go to the Tour de Austin bike races at the J.J. Pickle Research Center.. Those people are crazy. They race in huge groups, going really fast, negotiating tight turns. Amazing more people are not seriously injured at those races. We spent the rest of Monday watching Anthony Bourdain: No Reservations marathon, and making homemade pizza. It was a great weekend. It was so hard this morning to watch him leave for work. I am alone again in the house. Some days it is nice to be alone with your thoughts, but I have been alone so long…
Wednesday, September 1, 2010
August Wrap-up
Let me start by apologizing for not writing more this month, but its August in Texas and I think the heat effects my brain. I volunteered at the Breast Cancer Resource Center golf tournament, Suzy's Soldiers. It was a lot of fun. The girls and I worked the bar between the 9th and 10th hold. Being my first golf tournament I had no idea that the players would start drinking at 9am; but they were very nice and tipped very generously. Our bar raised the most money; maybe the tequila had something to do with that but I think it was because we were so damn cute. That night Cody and I went to the gala at Barton Creek Country Club after the tournament. It was the first time we have been back since our wedding, and we are happy to report it is still a beautiful place. The silent auction had some really cool sports memorabilia.
Yao Ming's shoe, size 18 or the size of my femur.
Ricky Williams football shoes.
On August 23rd I had my six week follow-up with Dr. Chang. He said I am healing very well and gave me permission to exercise. I’m even allowed to ride my mountain bike, as long as I “don’t fall forward.” Not sure how to accomplish this so I’ll probably stay off the trails. It would suck to pop one of my expanders. My exchange surgery is scheduled for November 9th. Dr. Chang is also a bike rider, so he understood when I asked to wait for surgery until after the Wurstride. The most gratifying thing about the entire visit was leaving, knowing that we do not have to be back until October 25th for my first post treatment follow-up with Dr. Gonzales.
Cody and I at the start of the 2009 Wurstride.
Cody, me, Tim, and Amy at the end of the 2009 Wurstride.
Now I’m concentrating on getting back to my life. I am actively looking for a job, and have managed to land two interviews. Hopefully by the end of September the heat will have subsided, life will be back to normal, and we will keep moving on.
Yao Ming's shoe, size 18 or the size of my femur.
Ricky Williams football shoes.
On August 23rd I had my six week follow-up with Dr. Chang. He said I am healing very well and gave me permission to exercise. I’m even allowed to ride my mountain bike, as long as I “don’t fall forward.” Not sure how to accomplish this so I’ll probably stay off the trails. It would suck to pop one of my expanders. My exchange surgery is scheduled for November 9th. Dr. Chang is also a bike rider, so he understood when I asked to wait for surgery until after the Wurstride. The most gratifying thing about the entire visit was leaving, knowing that we do not have to be back until October 25th for my first post treatment follow-up with Dr. Gonzales.
Cody and I at the start of the 2009 Wurstride.
Cody, me, Tim, and Amy at the end of the 2009 Wurstride.
Now I’m concentrating on getting back to my life. I am actively looking for a job, and have managed to land two interviews. Hopefully by the end of September the heat will have subsided, life will be back to normal, and we will keep moving on.
My new hairdo. Cody dyed it blond, and after two weeks it is almost twice this length. No sign of curls, but I now look like a Chia Pet. |
Monday, August 16, 2010
The Mysterious Healing Powers of the East Route
Sunday I did it. I got back on my bike and rode with a group, only four weeks post surgery. I can comfortably lift my arms above my head and support my weight on the handlebars. The only problem would be if I hit a hole or flatted a tire, but since I did the no-drop ride I didn’t have to worry about any of that. It was a beautiful morning, the sun was shinning, and the air was slightly cool with the promise of intense heat as the day wore on.
The Jack and Adam's shop ride was heading east. I love the east ride!
View Larger Map
The group slowly winds its way towards Springdale along 2nd street, past Full-screenCristo Rey Catholic Church where the priest has a Spanish word of the day, past the urban Boggy Creek Farm, and over the railroad tracks to Springdale Road. On Springdale we pass the house where the crazy lady once through a rock at the bikers in “her bike lane”, move through intersections most of us never see in our daily lives, pass old forgotten cemeteries, and small churches with bands starting to warm up for daily services. The group moves up and down small hills warming up for the larger hills ahead. We take a right on Loyola and make it through the intersection at 183; then up the hills on Johnny Morris in a single file line so cars can zoom by without getting too annoyed at the bikers. At the Budweiser distribution plant we take a breather and let everyone catch back up to the group. Then we move faster down a winding country road before popping out on Decker. None of us want to do the loop around the lake yet, so we ride down Decker to Loyola, go back across 183, and back towards the shop. While we were riding the neighborhoods have started to come alive. People are waiting at the bus stops, some in their church clothes and some just hoping to find someplace cool for the day. The Catholic churches are in between services and people are rushing to take their places inside, or are leaving ready to go about the rest of their day. As we cross under I-35 Mobile Loves and Fishes are feeding the homeless, and we are almost done. Rowers in their boats cut though the water as we pass over the Congress Avenue Bridge, and we are back at the shop.
Cody making sure that his bike is ready to go before the ride.
Zac and I, ready to conquer the morning ride.
Mark making sure everything is in tip top shape before proceeding.
Did I mention that I love the east ride? Cody and I started riding with the group in January 2009, it was so cold then. It was the ride that originally helped me get into shape, and drop 50+ lbs. I know that I can show up to the ride, and even if I’m not in the best shape or mood, by the end of the ride I will feel great. Since being diagnosed with Stage IIA Breast Cancer (T1N1M0) in December 2009 it has been the one activity, happening every Sunday morning, that if I felt well enough to attend, I would be there. And when I didn’t feel well enough to go, Cody tried his best to be there. It allows us to feel connected to our community of friends.
The Jack and Adam's shop ride was heading east. I love the east ride!
View Larger Map
The group slowly winds its way towards Springdale along 2nd street, past Full-screenCristo Rey Catholic Church where the priest has a Spanish word of the day, past the urban Boggy Creek Farm, and over the railroad tracks to Springdale Road. On Springdale we pass the house where the crazy lady once through a rock at the bikers in “her bike lane”, move through intersections most of us never see in our daily lives, pass old forgotten cemeteries, and small churches with bands starting to warm up for daily services. The group moves up and down small hills warming up for the larger hills ahead. We take a right on Loyola and make it through the intersection at 183; then up the hills on Johnny Morris in a single file line so cars can zoom by without getting too annoyed at the bikers. At the Budweiser distribution plant we take a breather and let everyone catch back up to the group. Then we move faster down a winding country road before popping out on Decker. None of us want to do the loop around the lake yet, so we ride down Decker to Loyola, go back across 183, and back towards the shop. While we were riding the neighborhoods have started to come alive. People are waiting at the bus stops, some in their church clothes and some just hoping to find someplace cool for the day. The Catholic churches are in between services and people are rushing to take their places inside, or are leaving ready to go about the rest of their day. As we cross under I-35 Mobile Loves and Fishes are feeding the homeless, and we are almost done. Rowers in their boats cut though the water as we pass over the Congress Avenue Bridge, and we are back at the shop.
Cody making sure that his bike is ready to go before the ride.
Zac and I, ready to conquer the morning ride.
Mark making sure everything is in tip top shape before proceeding.
Did I mention that I love the east ride? Cody and I started riding with the group in January 2009, it was so cold then. It was the ride that originally helped me get into shape, and drop 50+ lbs. I know that I can show up to the ride, and even if I’m not in the best shape or mood, by the end of the ride I will feel great. Since being diagnosed with Stage IIA Breast Cancer (T1N1M0) in December 2009 it has been the one activity, happening every Sunday morning, that if I felt well enough to attend, I would be there. And when I didn’t feel well enough to go, Cody tried his best to be there. It allows us to feel connected to our community of friends.
Wednesday, August 11, 2010
Dog Days of Recovery
Four weeks out of surgery, and my recovery is progressing nicely. I have some sections on my incisions that look like a skinned knee, but they are healing. To facilitate their healing I am still covering the wounds in Bacitracian and Xeroform, and wearing a soft jog bra. No tape! Of course all of this is happening to slowly for me. We are in the hottest part of the summer and I want to go swimming! It is frustrating to have to hide in the house because it is too hot to go outside.
My flexibility and reach is increasing everyday. I have exercises that I do three times a day, and am now able to reach my left hand straight over my head. This is a huge improvement, last week I could only get it about 45 degrees over my head. I have no problems with my right arm because they did not remove any lymph nodes enabling the muscles in my chest area to recover quicker. The edema in my left arm has also decreased significantly. After surgery my left arm was significantly more swollen than my right arm, now it is difficult to detect a difference. I am still waiting to be allowed to exercise, which is starting to drive me slightly stir crazy. I don’t understand how people can just sit at home day after day… it is so boring.
I have been passing the time by reading and volunteering for the Breast Cancer Research Center of Central Texas. On Friday August 20th I am selling raffle tickets at a BCRC's Suzy's Soldiers Golf Tournament. That night, Cody and I are attending the Gala Event at the Barton Creek Country Club. It will be the first time we have been back to Barton Creek since our wedding reception. The dress is “Texas Chic” and it sounds like a fun event. I finished reading Kitchen Confidential by Anthony Bourdain; a great book about working as a chef in New York City. I am now reading Wolf Hall by Hillary Mantel, recommended by my Aunt Ellen. In order to keep from going completely nuts I have requested that I be allowed to start working out. If Dr. Chang agrees, I may be on the bike by this weekend. Wish me luck!
My poor bike has been relegated to the trainer. I think we should get an award for creative use of a phone book.
A new game for Cody and I to learn to play. It sounds like a lot of fun, a mixture between scrabble and crossword puzzles.
My flexibility and reach is increasing everyday. I have exercises that I do three times a day, and am now able to reach my left hand straight over my head. This is a huge improvement, last week I could only get it about 45 degrees over my head. I have no problems with my right arm because they did not remove any lymph nodes enabling the muscles in my chest area to recover quicker. The edema in my left arm has also decreased significantly. After surgery my left arm was significantly more swollen than my right arm, now it is difficult to detect a difference. I am still waiting to be allowed to exercise, which is starting to drive me slightly stir crazy. I don’t understand how people can just sit at home day after day… it is so boring.
I have been passing the time by reading and volunteering for the Breast Cancer Research Center of Central Texas. On Friday August 20th I am selling raffle tickets at a BCRC's Suzy's Soldiers Golf Tournament. That night, Cody and I are attending the Gala Event at the Barton Creek Country Club. It will be the first time we have been back to Barton Creek since our wedding reception. The dress is “Texas Chic” and it sounds like a fun event. I finished reading Kitchen Confidential by Anthony Bourdain; a great book about working as a chef in New York City. I am now reading Wolf Hall by Hillary Mantel, recommended by my Aunt Ellen. In order to keep from going completely nuts I have requested that I be allowed to start working out. If Dr. Chang agrees, I may be on the bike by this weekend. Wish me luck!
My poor bike has been relegated to the trainer. I think we should get an award for creative use of a phone book.
A new game for Cody and I to learn to play. It sounds like a lot of fun, a mixture between scrabble and crossword puzzles.
Thursday, July 29, 2010
Pathlogy Report
Last Wednesday I went back to MD Anderson and met with Dr. Chang and Dr. Bedrosian. At my Bedrosian appointment I received my pathology report from the tissue removed during surgery. It was an excellent report. They only found a very, very tiny area with any cancer cells left and they found no sign of cancer in any of the lymph nodes that were removed. Dr. Bedrosian used the word “excellent” to describe my report, and radiation was not mentioned as a possibility. She is now bowing out as a member of my team and will only see me again if one of the other doctor’s would like her to see me. Dr. Chang is completely in charge of my recovery from the mastectomy, which makes sense since it is his job to reconstruct the tissues and he would have the most interest in making sure I heal correctly. Dr. Gonzales is responsible for my cancer follow-up care, and as Dr. Bedrosian said, “she is more than capable.”
Monday, July 26th, I had my follow up with Dr. Gonzales about the pathology report. She said it went really well, and they were not able to get any tissue for the clinical trial I participated in. She also told me about another clinical trial that she is sponsoring. This trial involves another 6 months of chemotherapy, using a different set of drugs with the side effects of Taxol and F.E.C. She recommended that I not participate in the trial. “It doesn’t make sense for you to participate in this trial, but I feel like I have to mention it to you and give you the option to participate.” Okay, fair enough. I’m not participating. You don’t need to tell me twice that I don’t need anymore chemotherapy.
Mom and I went to Lankford Grocery in midtown Houston for lunch. The burgers had to be at least a ½ pound each. Needless to say Mom and I did not finish our burgers, but they were really good. If I go there again I’m sharing my meal. We then headed back to MD Anderson for my afternoon appointment with Dr. Chang.
Dr. Chang removed both of my drains…YEAH!!! I thought it would hurt, but it actually relived some of the pressure and as a result some of the pain. He also put 65 cc more in each of my expanders, bringing the total amount to 410 cc. I think I’m going to keep them this size, but I’m going to wait a week before making my final decision. If I decide to not add the additional 40 cc per side, then I don’t see Dr. Chang again until August 23rd. At that appointment we will discuss when to schedule to surgery for the exchange. The exchange surgery is short, about an hour. They make a small incision along the mastectomy incision line, deflate and remove the expander, and insert the implant. The size of the incision is determined by the type of implant, saline or silicon that will be used.
Now I have to make my next big decision – size and, saline or silicone. How easy is that?
Monday, July 26th, I had my follow up with Dr. Gonzales about the pathology report. She said it went really well, and they were not able to get any tissue for the clinical trial I participated in. She also told me about another clinical trial that she is sponsoring. This trial involves another 6 months of chemotherapy, using a different set of drugs with the side effects of Taxol and F.E.C. She recommended that I not participate in the trial. “It doesn’t make sense for you to participate in this trial, but I feel like I have to mention it to you and give you the option to participate.” Okay, fair enough. I’m not participating. You don’t need to tell me twice that I don’t need anymore chemotherapy.
Mom and I went to Lankford Grocery in midtown Houston for lunch. The burgers had to be at least a ½ pound each. Needless to say Mom and I did not finish our burgers, but they were really good. If I go there again I’m sharing my meal. We then headed back to MD Anderson for my afternoon appointment with Dr. Chang.
Dr. Chang removed both of my drains…YEAH!!! I thought it would hurt, but it actually relived some of the pressure and as a result some of the pain. He also put 65 cc more in each of my expanders, bringing the total amount to 410 cc. I think I’m going to keep them this size, but I’m going to wait a week before making my final decision. If I decide to not add the additional 40 cc per side, then I don’t see Dr. Chang again until August 23rd. At that appointment we will discuss when to schedule to surgery for the exchange. The exchange surgery is short, about an hour. They make a small incision along the mastectomy incision line, deflate and remove the expander, and insert the implant. The size of the incision is determined by the type of implant, saline or silicon that will be used.
Now I have to make my next big decision – size and, saline or silicone. How easy is that?
Thursday, July 22, 2010
Surgery
It has been a week since I was released from the hospital. I feel 100% better than I did when I was released. On the morning of my surgery I had to check into the hospital at 5:15 in the morning, it was so early! Once I was signed in I was sent back to the pre-op holding area, changed into the always flattering hospital gown, and waited. The anesthesiologist came into my curtain room and started my IV. My hands are so small Cody made him go and get the smallest needle that they have, and he told him to get a shot of lidocaine. Once I was in the operating room they would put in a much bigger needle so that they could give me a blood transfusion if necessary. At around 7:30 I was taken back into the operating room. The next couple of days are a blur. I remember a little bit of the recovery room: the recovery nurse loosing Cody and then finding him, my mother-in-law Carolyn giving me a huge kiss before she left to go home, and Cheryl (my plastic surgeon’s PA) standing at the foot of my bed. When a room was ready they moved me into a private hospital room.
View out the window of my room
When they wheeled my bed into the hospital around 4:00 pm I remember everyone in the room staring at me – Dad, Diane, Mom, and Cody. It was really surreal. The room was dark and cold, and I was the center of attention. The rest of Tuesday and the night were a blur. I was in a lot of pain, and the morphine they gave me for pain did nothing. It was not until after the day shift came on that I finally received something for my pain. I don’t remember my night nurse, but I remember the doctors coming and checking on me. Tuesday night I was visited by Dr. Smith, Dr. Bedrosian’s resident. Wednesday morning Dr. Chang and Cheryl came to visit. Cody was so adept at discussing my pain and the different ways to manage it that Dr. Chang asked if he was a physician or pharmacist. Next, Dr. Thomas, Dr. Bedrosian’s fellow, came to visit. I never thought I would be visited by some many doctors in one day. It is normal for a teaching hospital, and I expected it, but it was still strange. All the doctors decided that I needed to stay one more night in the hospital because I was unable to stop vomiting. The consensus was that I had a bad reaction to the anesthesia and that it was not unexpected after undergoing a seven hour surgery.
Whiteboard in my hospital room used to keep track of important milestones, names of my care team, and treatment goals.
Cody managed to read to me all of the messages that people sent when he sent out my surgery updates. It was really nice to hear so many people were thinking about me. Poor Cody had to sleep on this awful sofa/chair thing in the hospital. It was really nice of Diane to take him back to their hotel and let him take a shower and nap. I’m really glad that he got a chance to get away. It was very strange being in the hospital. Every few hours someone would come into my room to do something. Wednesday night I managed to get a good night sleep, as good as one can expect in the hospital, and by Thursday morning I was ready to get out of the hospital. First I had to eat something (and keep it down) and take at least a 5 minute walk. My walk around the floor was the first time that I had been out of my room since they wheeled me in on Tuesday. It felt great to finally get out of that stupid bed, with its stupid air mattress, and stretch my legs. It took five hours from the time I was told by Dr. Smith that he was letting me leave the hospital until the discharge papers were ready for me to sign.
Waiting to sign the discharge papers and get unhooked from my IV.
They called down to have someone assist me out of the hospital, and after waiting a few hours Dad and I decided to make a break for it. He grabbed my bags and we made our escape. On the way to the elevator we encountered the discharge cart, “Let me guess, room 22?” So we piled all my stuff on the cart and went to meet Cody downstairs. I insisted on walking out of the hospital under my own power, no assistance necessary. Cody managed to get me in the front seat, all of our bags loaded, and we were off. Back home to Austin.
View out the window of my room
When they wheeled my bed into the hospital around 4:00 pm I remember everyone in the room staring at me – Dad, Diane, Mom, and Cody. It was really surreal. The room was dark and cold, and I was the center of attention. The rest of Tuesday and the night were a blur. I was in a lot of pain, and the morphine they gave me for pain did nothing. It was not until after the day shift came on that I finally received something for my pain. I don’t remember my night nurse, but I remember the doctors coming and checking on me. Tuesday night I was visited by Dr. Smith, Dr. Bedrosian’s resident. Wednesday morning Dr. Chang and Cheryl came to visit. Cody was so adept at discussing my pain and the different ways to manage it that Dr. Chang asked if he was a physician or pharmacist. Next, Dr. Thomas, Dr. Bedrosian’s fellow, came to visit. I never thought I would be visited by some many doctors in one day. It is normal for a teaching hospital, and I expected it, but it was still strange. All the doctors decided that I needed to stay one more night in the hospital because I was unable to stop vomiting. The consensus was that I had a bad reaction to the anesthesia and that it was not unexpected after undergoing a seven hour surgery.
Whiteboard in my hospital room used to keep track of important milestones, names of my care team, and treatment goals.
Cody managed to read to me all of the messages that people sent when he sent out my surgery updates. It was really nice to hear so many people were thinking about me. Poor Cody had to sleep on this awful sofa/chair thing in the hospital. It was really nice of Diane to take him back to their hotel and let him take a shower and nap. I’m really glad that he got a chance to get away. It was very strange being in the hospital. Every few hours someone would come into my room to do something. Wednesday night I managed to get a good night sleep, as good as one can expect in the hospital, and by Thursday morning I was ready to get out of the hospital. First I had to eat something (and keep it down) and take at least a 5 minute walk. My walk around the floor was the first time that I had been out of my room since they wheeled me in on Tuesday. It felt great to finally get out of that stupid bed, with its stupid air mattress, and stretch my legs. It took five hours from the time I was told by Dr. Smith that he was letting me leave the hospital until the discharge papers were ready for me to sign.
Waiting to sign the discharge papers and get unhooked from my IV.
They called down to have someone assist me out of the hospital, and after waiting a few hours Dad and I decided to make a break for it. He grabbed my bags and we made our escape. On the way to the elevator we encountered the discharge cart, “Let me guess, room 22?” So we piled all my stuff on the cart and went to meet Cody downstairs. I insisted on walking out of the hospital under my own power, no assistance necessary. Cody managed to get me in the front seat, all of our bags loaded, and we were off. Back home to Austin.
Friday, July 9, 2010
Frustrating Day at the Hospital
Wednesday was my last day of appointments before having surgery on Tuesday July 13th. It also was one of the most frustrating days that Cody and I have had at the hospital in a long time. The doctors were running really late, their staff members were disorganized, and everything that could get messed up did. Dr. Chang, my reconstructive surgeon, got a new crop of interns and fellows last week; so Cheryl, his P.A., was busy dealing with their issues. When they finally got around to seeing me, an hour and a half late, they took two pictures and we saw Dr. Chang for about 30 seconds. It was crazy! Since they were running so late I confirmed with Dr. Bedrosian’s office that it was okay if I went and had my EKG and blood drawn before my appointment with her. Down at the testing center they moved everything around, took more seats out of the waiting area to accommodate their “new” check-in system, and in the process increased waiting times. My EKG test was fine. The tech said that unless she picks up the phone and calls the cardiologist that the exam was okay. She told me that people come to see her and are so excited about going home, catching a plane in a few hours, and she has to call the cardiologist. The patient has to go to emergency surgery and doesn’t get to go home as planned. She hates telling people they are not free to continue on with their lives as planned. This appointment was the first time since I had my port installed that I did not have it accessed and used for my blood draw. I was really nervous about getting my blood drawn the conventional way. Surprise the build up was worse than the actual blood draw – it did not bother me at all. I guess I’m getting used to the idea of being stuck with needles. A good phlebotomist didn’t hurt either. While in the waiting room we noticed an inordinate amount of people in wheelchairs and walkers. There were traffic jams because of the number of wheelchairs! Back upstairs we went for my appointment with Dr. Bedrosian. Mainly we meet with her P.A., Erin, who went on maternity leave yesterday. I guess I’ll meet the new P.A. right before surgery…
Mom came and picked us up and we went to lunch at this great Vietnamese place in midtown. I’m so glad that I didn’t give up my lunch because we were running a little late. My next appointment was the dreaded anesthesia assessment. These people never run on-time, and we have not decided what their purpose actually is in the process. I never saw a nurse or doctor, just a technician that gave me a page and a half of instructions; and confirmed that everything I filled out on the paperwork an hour before was correct. This is such a waste of time and an example of the inefficiencies inherent in the system. No wonder health care is so expensive!
I did sign up for one more clinical trial. This trial is studying the results of standard general anesthesia versus general anesthesia and a paravertebral block. I was randomized to the study group. What are the chances that in both random studies I get randomized to the study group? Oh well. The combo is supposed to decrease pain and downtime after surgery. And the drugs are all FDA approved and have been used in this way before, they are just now getting around to doing the clinical trial. I agreed to participate in another clinical trial, but the pre-trial pregnancy test became too difficult to complete. In order to participate in the trial concerning the anesthesia I had to have a blood pregnancy test. That test revealed that I’m menopausal, so they needed to confirm the results via a urine test; but the neglected to tell me this until the next morning. Sorry I’m on my way home to Austin, and not coming back to Houston until late Monday night. Oh well. When all this is over I have been, or am continuing to be, part of at least four clinical trials; five if you count the study they did on my placenta when I was born. I have done my part for science.
Tuesday July 13th is my surgery date. They are doing a double mastectomy with immediate reconstructive surgery. This surgery is considered day surgery by MD Anderson and I will not be admitted to the hospital. After surgery they will hold me in a holding area, make sure that I recover from the anesthesia, and send me home. Cody and I will then go to Carolyn and Reagan’s in northwest Houston. Depending how I feel we will leave the next morning for Austin and be home Thursday. Dad, and maybe Diane, is coming down from Dallas to help out until my first doctor appointment. Depending on how I’m feeling, mom may come down to help out the next week, or we may only need our support group in Austin to help out.
Cody and I have started a Care Calendar to let people know what we assistance we might need following surgery. Right now the calendar is pretty sparse as we wait to see exactly how I am feeling. If you want to be part of the calendar, please let me know. I can send you the log in information and you can sign up to fulfill needs. The calendar will more than likely change next week as we get a better idea of exactly what is going to happen.
Thank you everyone for helping out. We appreciate all of your comments, suggestions, ears…everything that you have done to help make this journey easier.
Mom came and picked us up and we went to lunch at this great Vietnamese place in midtown. I’m so glad that I didn’t give up my lunch because we were running a little late. My next appointment was the dreaded anesthesia assessment. These people never run on-time, and we have not decided what their purpose actually is in the process. I never saw a nurse or doctor, just a technician that gave me a page and a half of instructions; and confirmed that everything I filled out on the paperwork an hour before was correct. This is such a waste of time and an example of the inefficiencies inherent in the system. No wonder health care is so expensive!
I did sign up for one more clinical trial. This trial is studying the results of standard general anesthesia versus general anesthesia and a paravertebral block. I was randomized to the study group. What are the chances that in both random studies I get randomized to the study group? Oh well. The combo is supposed to decrease pain and downtime after surgery. And the drugs are all FDA approved and have been used in this way before, they are just now getting around to doing the clinical trial. I agreed to participate in another clinical trial, but the pre-trial pregnancy test became too difficult to complete. In order to participate in the trial concerning the anesthesia I had to have a blood pregnancy test. That test revealed that I’m menopausal, so they needed to confirm the results via a urine test; but the neglected to tell me this until the next morning. Sorry I’m on my way home to Austin, and not coming back to Houston until late Monday night. Oh well. When all this is over I have been, or am continuing to be, part of at least four clinical trials; five if you count the study they did on my placenta when I was born. I have done my part for science.
Tuesday July 13th is my surgery date. They are doing a double mastectomy with immediate reconstructive surgery. This surgery is considered day surgery by MD Anderson and I will not be admitted to the hospital. After surgery they will hold me in a holding area, make sure that I recover from the anesthesia, and send me home. Cody and I will then go to Carolyn and Reagan’s in northwest Houston. Depending how I feel we will leave the next morning for Austin and be home Thursday. Dad, and maybe Diane, is coming down from Dallas to help out until my first doctor appointment. Depending on how I’m feeling, mom may come down to help out the next week, or we may only need our support group in Austin to help out.
Cody and I have started a Care Calendar to let people know what we assistance we might need following surgery. Right now the calendar is pretty sparse as we wait to see exactly how I am feeling. If you want to be part of the calendar, please let me know. I can send you the log in information and you can sign up to fulfill needs. The calendar will more than likely change next week as we get a better idea of exactly what is going to happen.
Thank you everyone for helping out. We appreciate all of your comments, suggestions, ears…everything that you have done to help make this journey easier.
Monday, July 5, 2010
Happy Birthday Mom!!
I forgot to call my mom on her birthday, July 3rd. Cody and I buy her a present on her birthday, so that makes up for it. Her friends threw her a bash last night.
You make the BEST cheerleader!
After a hard morning of cheering in the 2008 Austin Triathlon.
Making signs with Linda for the 2009 Danskin Triathlon.
Making faces after the 2010 Aquarena Springs Triathlon.
Getting a kiss after an emotional GRAPHICS IV Art Bra Show.
Love,
Rachel and Cody
HAPPY 60TH MOM!!
You make the BEST cheerleader!
After a hard morning of cheering in the 2008 Austin Triathlon.
Making signs with Linda for the 2009 Danskin Triathlon.
Making faces after the 2010 Aquarena Springs Triathlon.
Getting a kiss after an emotional GRAPHICS IV Art Bra Show.
Love,
Rachel and Cody
Friday, July 2, 2010
We Are Pink Ribbon Cowgirls
The following was written by one of my fellow Pink Ribbon Cowgirls, Deborah Carroll. It eloquently expresses why I am so happy and proud to know such a fantastic group of women.
Brenda Ladd took the photo related to my writing this, and I believe it will be included in the 2011 ArtBra calendar, produced as a fundraiser for the Breast Cancer Resource Center. I love the two women with whom I am posing, and all three of us have amazing strengths and, of course, amazing weaknesses. I forget I have been diagnosed with breast cancer so much of the time. Others seem to project that since I am so very involved in the cancer community (and I am not nearly as involved as so many of my sisters and brothers), breast cancer must be my identity. I think I speak for all of us when I say that none of us wants or takes on cancer as an identity. We are strong. We are weak. We weep alone, crying without sound from open mouths that struggle to express emotional pain. We joyfully celebrate many of lifes blessings. We are often in physical pain. Three of my sisters have passed on to the afterlife within the past year. They loved well and hard and fully, leaving this earth in their states of great peace. We think we are finished when another lump and a different cancer is found. We compete in marathons, triathlons, multi-day races and physical/mental/emotional challenges of many types. We struggle to keep self-owned and operated businesses in tact while we deal with surgeries and appointments, children & families & pets. We struggle to deal with bosses and co-workers who treat us "less-than", OR, we often have some of the most compassionate co-workers on the face of the earth. We have insurance. We do not have insurance. We have to fight with insurance to pay for testing that may save our lives. I had great insurance during the bulk of my treatment and have now had no insurance for 1.5 years because I cannot afford it. We lose significant others because they internalise our diagnosis. We work to be present, to be available for the next woman or man who crosses our path, struggling with or simply making acceptable sense of this diagnosis. Pink Ribbon Cowgirls have been diagnosed with breast cancer, and the median age is probably 34 for our group...I didn't ask Runi for stats. I am 47 this month. I act about 24 in loose social settings. One of our group was 19 when diagnosed. At least once per week I am approached by a friend who has a friend who knows someone who has found a lump or has been diagnosed...may they call me??? Absolutely! One thing I have found to be never-endingly true is that we DON'T KNOW WHAT WE DON'T KNOW. I did not know anything about the Pink Ribbon Cowgirls and went through my diagnosis and treatment asking for particular tests and driving toward beneficial protocol. I have many years background in medical information, pharmacology, holistic body treatment and being intuitive about my own body. Many other Cowgirls do too, or they have learned to, as they see how to plug in what they thought they knew with what really happens in their bodies, comparing notes with others of us. Most of us have friends we love dearly who have had varieties of cancers...we love together, we train together, we cook together, we sit in chemo rooms and by hospital beds...for melanoma, for uterine cancer, for pancreatic, for metastatic...for whatever. I believe anyone can relate if anyone wants to relate, and they must first relate to the depths of their own perceived struggles and subsequent victories/perceived failures. One of my favorite quips is "get real, get well", and by owning all of who I am, or working to do such, I work toward greater healing for myself and for others. Some of us have had a lumpectomy and radiation, often over 10 years ago, and have had no other signs of clumping cancer cells in our bodies. Some of us have had double mastectomies, radiation and chemo, only to find a recurrence shortly after we thought we were "through". Most of us are somewhere in-between. Some of us have lived with stage IV cancer for 5+ years...having had cancer diagnoses for 10+ years. We wouldn't notice if we didn't have to show up weekly or monthly for chemo the remainder of our lives. SOME of us bravely (and smartly, imho) had prophylactic mastectomies solely based on family history and prevalence of breast cancer in our immediate families. Most of us try to get our friends to be pro-active about getting breast checks and gyn. checks. I know I am limited, know I am driven by character defects on many occasions, however I know that I have been given gifts by God, gifts of discovery and strength, gifts of encouragement, and I only hope to keep the door open for these gifts to be used appropriately. My sisters are the same. We are not superhuman because we show up...we have only been given that strength for that moment...and if we can, we do. Many of us have a multitude of life challenges, from absent family to blind children to a child with a brain tumor to diagnoses of bi-polar disorder or severe panic attacks...from feeling completely alone to being completely supported by the most idyllic family and friends imaginable. We are just people. We have been diagnosed with or related strongly with breast cancer and we have taken steps toward healing. There is so much more to us than cancer.
We will be here for you.
Brenda Ladd took the photo related to my writing this, and I believe it will be included in the 2011 ArtBra calendar, produced as a fundraiser for the Breast Cancer Resource Center. I love the two women with whom I am posing, and all three of us have amazing strengths and, of course, amazing weaknesses. I forget I have been diagnosed with breast cancer so much of the time. Others seem to project that since I am so very involved in the cancer community (and I am not nearly as involved as so many of my sisters and brothers), breast cancer must be my identity. I think I speak for all of us when I say that none of us wants or takes on cancer as an identity. We are strong. We are weak. We weep alone, crying without sound from open mouths that struggle to express emotional pain. We joyfully celebrate many of lifes blessings. We are often in physical pain. Three of my sisters have passed on to the afterlife within the past year. They loved well and hard and fully, leaving this earth in their states of great peace. We think we are finished when another lump and a different cancer is found. We compete in marathons, triathlons, multi-day races and physical/mental/emotional challenges of many types. We struggle to keep self-owned and operated businesses in tact while we deal with surgeries and appointments, children & families & pets. We struggle to deal with bosses and co-workers who treat us "less-than", OR, we often have some of the most compassionate co-workers on the face of the earth. We have insurance. We do not have insurance. We have to fight with insurance to pay for testing that may save our lives. I had great insurance during the bulk of my treatment and have now had no insurance for 1.5 years because I cannot afford it. We lose significant others because they internalise our diagnosis. We work to be present, to be available for the next woman or man who crosses our path, struggling with or simply making acceptable sense of this diagnosis. Pink Ribbon Cowgirls have been diagnosed with breast cancer, and the median age is probably 34 for our group...I didn't ask Runi for stats. I am 47 this month. I act about 24 in loose social settings. One of our group was 19 when diagnosed. At least once per week I am approached by a friend who has a friend who knows someone who has found a lump or has been diagnosed...may they call me??? Absolutely! One thing I have found to be never-endingly true is that we DON'T KNOW WHAT WE DON'T KNOW. I did not know anything about the Pink Ribbon Cowgirls and went through my diagnosis and treatment asking for particular tests and driving toward beneficial protocol. I have many years background in medical information, pharmacology, holistic body treatment and being intuitive about my own body. Many other Cowgirls do too, or they have learned to, as they see how to plug in what they thought they knew with what really happens in their bodies, comparing notes with others of us. Most of us have friends we love dearly who have had varieties of cancers...we love together, we train together, we cook together, we sit in chemo rooms and by hospital beds...for melanoma, for uterine cancer, for pancreatic, for metastatic...for whatever. I believe anyone can relate if anyone wants to relate, and they must first relate to the depths of their own perceived struggles and subsequent victories/perceived failures. One of my favorite quips is "get real, get well", and by owning all of who I am, or working to do such, I work toward greater healing for myself and for others. Some of us have had a lumpectomy and radiation, often over 10 years ago, and have had no other signs of clumping cancer cells in our bodies. Some of us have had double mastectomies, radiation and chemo, only to find a recurrence shortly after we thought we were "through". Most of us are somewhere in-between. Some of us have lived with stage IV cancer for 5+ years...having had cancer diagnoses for 10+ years. We wouldn't notice if we didn't have to show up weekly or monthly for chemo the remainder of our lives. SOME of us bravely (and smartly, imho) had prophylactic mastectomies solely based on family history and prevalence of breast cancer in our immediate families. Most of us try to get our friends to be pro-active about getting breast checks and gyn. checks. I know I am limited, know I am driven by character defects on many occasions, however I know that I have been given gifts by God, gifts of discovery and strength, gifts of encouragement, and I only hope to keep the door open for these gifts to be used appropriately. My sisters are the same. We are not superhuman because we show up...we have only been given that strength for that moment...and if we can, we do. Many of us have a multitude of life challenges, from absent family to blind children to a child with a brain tumor to diagnoses of bi-polar disorder or severe panic attacks...from feeling completely alone to being completely supported by the most idyllic family and friends imaginable. We are just people. We have been diagnosed with or related strongly with breast cancer and we have taken steps toward healing. There is so much more to us than cancer.
We will be here for you.
Wednesday, June 30, 2010
Test Results
Waiting for test results to be posted online is torture. I guess I’m lucky that MD Anderson does post results online and that I don’t have to wait for the mail to come; but they do continue to send me a printed schedule every week. I wonder if I can turn that function off…
The test results that I did get back are good. The mammogram showed just the titanium clip that was put in my tumor as a marker back in December 2009, and did not reveal any suspicious lymph nodes. The ultrasound revealed that my tumor has begun to flatten out and form what is essentially scar tissue because the cells are dead. It also did not find any swollen or suspicious lymph nodes. The test that I made me the most nervous was the CT scan. On my original scan in December they found a hemangioma, which they though to be benign. According to the Mayo Clinic a hemangioma is defined as: “Liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass that occurs in the liver.” It is considered to be a type of birth defect; most are diagnosed between the ages of 30-50 and discovered during a test for some other condition. The CT scan last week was to confirm that it was benign. If it had shrunk by responding to chemotherapy, or grown, it would have meant that it was not benign and may have been liver cancer. The mass has not changed and is still considered a benign hemangioma. This is probably one of the few times that a person can be happy to have a birth defect. The CT scan also reveled that my organs are all normal and that the chemotherapy did not cause kidney damage. All appears to be in good working order. Next week I’ll have another blood test and an EKG; this time they need to see if my heart is still healthy enough for surgery. I’m not too worried about this test, in fact I’m more nervous about having to give blood and get stuck by a needle (no port access this time). Oh well. I’ll just take an Ativan before they try and stick me…
Here are more pictures from the party, courtesy of Diane Jackson.
Cody, Zac, Melanie, and Steve.
Rachel, rocking the bald look, talking to Pavla and Jim.
Nancy, Linda, and Shelton enjoying conversation of small town Texas.
Lee and Paula Aaronson, we were thrilled to see you two again.
Melanie and Brady debating going in the water, Nancy and Linda having a laugh.
Cody, Shelton, and Rachel.
The test results that I did get back are good. The mammogram showed just the titanium clip that was put in my tumor as a marker back in December 2009, and did not reveal any suspicious lymph nodes. The ultrasound revealed that my tumor has begun to flatten out and form what is essentially scar tissue because the cells are dead. It also did not find any swollen or suspicious lymph nodes. The test that I made me the most nervous was the CT scan. On my original scan in December they found a hemangioma, which they though to be benign. According to the Mayo Clinic a hemangioma is defined as: “Liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass that occurs in the liver.” It is considered to be a type of birth defect; most are diagnosed between the ages of 30-50 and discovered during a test for some other condition. The CT scan last week was to confirm that it was benign. If it had shrunk by responding to chemotherapy, or grown, it would have meant that it was not benign and may have been liver cancer. The mass has not changed and is still considered a benign hemangioma. This is probably one of the few times that a person can be happy to have a birth defect. The CT scan also reveled that my organs are all normal and that the chemotherapy did not cause kidney damage. All appears to be in good working order. Next week I’ll have another blood test and an EKG; this time they need to see if my heart is still healthy enough for surgery. I’m not too worried about this test, in fact I’m more nervous about having to give blood and get stuck by a needle (no port access this time). Oh well. I’ll just take an Ativan before they try and stick me…
Here are more pictures from the party, courtesy of Diane Jackson.
Cody, Zac, Melanie, and Steve.
Rachel, rocking the bald look, talking to Pavla and Jim.
Nancy, Linda, and Shelton enjoying conversation of small town Texas.
Lee and Paula Aaronson, we were thrilled to see you two again.
Melanie and Brady debating going in the water, Nancy and Linda having a laugh.
Cody, Shelton, and Rachel.
Thanks again to everyone that came. We had a GREAT time!!
Tuesday, June 29, 2010
Time to P-A-R-T-Y!!
Saturday we celebrated my completion of chemo with a fantastic party. Cody moved the grill and we had chicken wings, hot dogs, and beer out by our community pool then moved in doors to play Rock Band. I want to thank Jim and Pavla, and Brady and Melanie, for bringing their game systems and props. You all helped make the party a party.
Party Pics!
Pavla, Jim, Stewart and Stephanie enjoying the beautiful day.
David, Steve, and Melanie...probably discussing the pros and cons of the oil and gas business :)
Hiding under cover from the HOT sun!
Fellow Cowgirl Amy with her kids - Mason and Hadley.
Michael and Tammy...it was great to see old friends again.
Cody and David having a great time rocking out!!
Cody and Brady...they just look like brothers.
I’m slowly working my way back into shape, working out when I can. Yesterday I rode about 20 miles in the morning and went swimming at Lake Travis in the afternoon. My muscles are coming back after chemo, I can feel the soreness. It is such a great feeling!! Finally!!
Party Pics!
Pavla, Jim, Stewart and Stephanie enjoying the beautiful day.
David, Steve, and Melanie...probably discussing the pros and cons of the oil and gas business :)
Hiding under cover from the HOT sun!
Fellow Cowgirl Amy with her kids - Mason and Hadley.
Michael and Tammy...it was great to see old friends again.
Cody and David having a great time rocking out!!
Cody and Brady...they just look like brothers.
I’m slowly working my way back into shape, working out when I can. Yesterday I rode about 20 miles in the morning and went swimming at Lake Travis in the afternoon. My muscles are coming back after chemo, I can feel the soreness. It is such a great feeling!! Finally!!
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