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?
Thursday, July 29, 2010
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.
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