It's 7:45 after an interesting night. Cathy is doing well, but neither of us slept much because there was a girl next door who really didn't want to be in the hospital, wanted to have nurses working on her even less, and wasn't bashful in telling the entire hospital about it in no uncertain terms. All of that aside, the night was ok. Cathy had her catheter removed, he pain pump removed (which she only used a couple of times), has gotten up to walk around and use the restroom, and is feeling pretty good. The abdominal pain is considerable, of course. Her potassium is low, which is becoming a theme with Cathy, due to all the fluids she's received. She'll get two bags of K over the next four or five hours and then we should be on our way home.
Cathy is a bright spirit and kind soul. She's tough, determined, and strong willed. I'm sure she'll be functioning at full speed soon.
Tuesday, April 22, 2014
Monday, April 21, 2014
Surgery Update
This morning we arrived at the hospital at 5:30. Cathy was quickly moved to prep and had a gown on in no time. We met with anesthesia and Dr. Bowling before Cathy got loopy from versed. Cathy was in surgery by 7:30 and out a little after 9:00.
Dr. Bowling said that everything went according to plan. Her ovaries had slight adhesion to her uterus, so Dr. Bowling took a little of her uterine tissue along with the ovaries to make sure that all ovarian tissue was removed. Her mysterious pains on her right side will remain a mystery. Ever since her appendectomy she has had strange pains in the vicinity of the right ovary. When her appendix went crazy it became fused to her ovary and a cyst and they all had to be separated when her appendix was removed. Dr. Bowling saw nothing particularly strange in that area, so I guess we'll never know.
Cathy will stay overnight at Christ tonight and go home some time tomorrow. She's still asleep. I'll update again when she's talking.
Dr. Bowling said that everything went according to plan. Her ovaries had slight adhesion to her uterus, so Dr. Bowling took a little of her uterine tissue along with the ovaries to make sure that all ovarian tissue was removed. Her mysterious pains on her right side will remain a mystery. Ever since her appendectomy she has had strange pains in the vicinity of the right ovary. When her appendix went crazy it became fused to her ovary and a cyst and they all had to be separated when her appendix was removed. Dr. Bowling saw nothing particularly strange in that area, so I guess we'll never know.
Cathy will stay overnight at Christ tonight and go home some time tomorrow. She's still asleep. I'll update again when she's talking.
Sunday, April 20, 2014
Cathy's Oophorectomy
It's been a long time since I made a blog post. No news is good news, right? Life and cancer recovery have been going along well for Cathy. Tomorrow is a next step, though. It is one we have planned for over a long period of time, but it doesn't make it easier. Tomorrow, Cathy will have her ovaries and fallopian tubes removed. This is a prophylactic surgery. While there will be pathology on the tissue that is removed, there are no indications that she currently has any cancer in her ovaries or tubes. The procedure is a planned course of action due to her BRCA1 gene mutation, which was a culprit in her development of breast cancer and has a strong correlation to ovarian cancer.
Since I haven't posted in quite a long time, let me give you an overview of recent times that led us to where we are now.
Friday before Memorial Day, 2012 - Cathy found a pea sized lump in her right breast
Saturday - Monday - Wait impatiently
Tuesday after Memorial Day - She went to her OBGYN who ordered an ultrasound
Wednesday - Ultrasound
Friday - Biopsy on the lump
Saturday - Sunday - Wait impatiently
Monday - The bad news comes. Breast cancer diagnosis.
First week of June - We learn more about the cancer. It is triple negative. She has genetic testing. She is BRCA1 gene mutation positive. These things are important to know in developing a treatment plan. She will have neoadjuvant chemotherapy, followed by bilateral mastectomy. Radiation TBD.
June 18 - Cathy has her first infusion of chemo: adriamycin, cytoxan, taxotere. She has six infusions, one every three weeks.
October 1 - Cathy finishes chemotherapy treatments
November 1 - Biopsy of lymph nodes. All clear. She will not need radiation.
November 13 - Bilateral mastectomy and tissue expander implants. Complete bilateral mastectomy is the choice because BRCA1 gene mutation means a high likelihood of recurrence if any breast tissue remains. Successful mastectomy, problems with the expanders. One expander leaks and is empty in a few days.
January 4, 2013 - Tissue expanders are replaced with permanent silicone gel implants.
February 2013 - Cathy develops capsular contracture, a hardening of the scar capsule around her implants.
April 23 - Cathy has her silicone gel implants removed and replaced with saline implants.
The last year - Cathy has regained strength, stamina, dealt with psoriasis and arthritis, planned for this upcoming oophorectomy, become dependent upon yoga for good feelings, went through menopause, came out of menopause, and has been a great mom.
Tomorrow Dr. Marcia Bowling will make 5 small incisions in Cathy's abdomen and then use robotic techniques to remove her ovaries, fallopian tubes, and a small portion of the tendon connected to the fallopian tubes. Apparently ovarian cancer most often develops in the tubes and travels to the ovaries, hence the need to take a portion of the tendon, as well.
Thank you all for hanging with us through all of this. We have felt the love all along.
Since I haven't posted in quite a long time, let me give you an overview of recent times that led us to where we are now.
Friday before Memorial Day, 2012 - Cathy found a pea sized lump in her right breast
Saturday - Monday - Wait impatiently
Tuesday after Memorial Day - She went to her OBGYN who ordered an ultrasound
Wednesday - Ultrasound
Friday - Biopsy on the lump
Saturday - Sunday - Wait impatiently
Monday - The bad news comes. Breast cancer diagnosis.
First week of June - We learn more about the cancer. It is triple negative. She has genetic testing. She is BRCA1 gene mutation positive. These things are important to know in developing a treatment plan. She will have neoadjuvant chemotherapy, followed by bilateral mastectomy. Radiation TBD.
June 18 - Cathy has her first infusion of chemo: adriamycin, cytoxan, taxotere. She has six infusions, one every three weeks.
October 1 - Cathy finishes chemotherapy treatments
November 1 - Biopsy of lymph nodes. All clear. She will not need radiation.
November 13 - Bilateral mastectomy and tissue expander implants. Complete bilateral mastectomy is the choice because BRCA1 gene mutation means a high likelihood of recurrence if any breast tissue remains. Successful mastectomy, problems with the expanders. One expander leaks and is empty in a few days.
January 4, 2013 - Tissue expanders are replaced with permanent silicone gel implants.
February 2013 - Cathy develops capsular contracture, a hardening of the scar capsule around her implants.
April 23 - Cathy has her silicone gel implants removed and replaced with saline implants.
The last year - Cathy has regained strength, stamina, dealt with psoriasis and arthritis, planned for this upcoming oophorectomy, become dependent upon yoga for good feelings, went through menopause, came out of menopause, and has been a great mom.
Tomorrow Dr. Marcia Bowling will make 5 small incisions in Cathy's abdomen and then use robotic techniques to remove her ovaries, fallopian tubes, and a small portion of the tendon connected to the fallopian tubes. Apparently ovarian cancer most often develops in the tubes and travels to the ovaries, hence the need to take a portion of the tendon, as well.
Thank you all for hanging with us through all of this. We have felt the love all along.
Sunday, November 24, 2013
Good Doctors
Cathy's doctors have been a most excellent blessing. Other than a little panic due to feeling the need to make quick decisions at the beginning of her ordeal, we have been able to find doctors who I believe to be the best available. Even the first breast surgeon, who we chose to leave, was an excellent doctor - just not the right fit.
It's hard to find good doctors, though. Harder than it should be. When we realized that Cathy's breast surgeon wasn't the right fit I began spending hours researching. I used doctors rating websites, doctors' own websites, the results of plain old google searches, and angie's list to learn about the doctors available to us. It took a long time and was it was difficult to process all the information. It was especially difficult to determine which sources and evaluations were credible. I tend to believe that when it comes to ratings of things online it is usually the fanatics who leave ratings and comments. It seems that people who take the time to make thoughtful comments are either extremely pleased or extremely upset about their experiences. The average experience is often unrepresented.
Doctors with very full schedules or doctors who are nearing retirement present a vexing problem in this process. We have experienced this in trying to find a dermatologist for Cathy. With her psoriasis history, Cathy has needed to see a dermatologist. We didn't like the doctor that we had seen years ago, so decided to find a new one. We followed some friends' and other doctors' recommendations. One dermatologist seemed to be somewhat incompetent and had a very socially awkward staff (there was a really strange social dynamic going on in that office). Another dermatologist was highly qualified, extremely knowledgeable, and had some of the worst bedside manner imaginable. Cathy tried to make an appointment with the dermatologist in our primary care group. This dermatologist would be happy to see her...in March. Through those and other appointments, Cathy had been unable to have her psoriasis addressed to her satisfaction.
This week she had follow ups with her outstanding oncologist and her bff breast surgeon. Both doctors, independently and unsolicited from one another asked her about her vitiligo. Vitiligo? Yes, that looks like vitiligo. They could see how it would be mistaken for psoriasis because it is flaky, but clearly there is a loss of pigment. How could two doctors who aren't dermatologists get this, but the dermatologists couldn't?
Cathy had been resistant to calling my awesome dermatologist because, frankly, he's old. He's the best in Cincinnati, but he's old. She called. "I'm sorry, he's not taking any more appointments. He'll be retired as of January 1." That was predictable. All of Cathy's favorite stuff gets discontinued!
So the next day Cathy saw her excellent rheumatologist who also mentioned her vitiligo. The rheumatologist offered to get her an earlier appointment with the dermatologist in our primary care group...next week! The rheumatologist predicted that Cathy will have to have a biopsy to confirm vitiligo, but that there could be some successful treatment options ahead for her.
This has been a difficult process. I'm thankful that all of this has been related to a relatively minor situation. It would be much more distressing to be misdiagnosed and mistrusting of our doctors if this were a life altering health situation. Yet, I know that is the case for many people.
It's difficult to find the right doctor. Credible recommendations and references are hard to come by. Sometimes you find a great doctor who just isn't right for you. Many times you have to trust your gut. Thankfully, Cathy is really good at reading people and can tell almost instantly if the situation is right. I'm thankful for our doctors and I'm thankful for Cathy's perceptive people skills.
It's hard to find good doctors, though. Harder than it should be. When we realized that Cathy's breast surgeon wasn't the right fit I began spending hours researching. I used doctors rating websites, doctors' own websites, the results of plain old google searches, and angie's list to learn about the doctors available to us. It took a long time and was it was difficult to process all the information. It was especially difficult to determine which sources and evaluations were credible. I tend to believe that when it comes to ratings of things online it is usually the fanatics who leave ratings and comments. It seems that people who take the time to make thoughtful comments are either extremely pleased or extremely upset about their experiences. The average experience is often unrepresented.
Doctors with very full schedules or doctors who are nearing retirement present a vexing problem in this process. We have experienced this in trying to find a dermatologist for Cathy. With her psoriasis history, Cathy has needed to see a dermatologist. We didn't like the doctor that we had seen years ago, so decided to find a new one. We followed some friends' and other doctors' recommendations. One dermatologist seemed to be somewhat incompetent and had a very socially awkward staff (there was a really strange social dynamic going on in that office). Another dermatologist was highly qualified, extremely knowledgeable, and had some of the worst bedside manner imaginable. Cathy tried to make an appointment with the dermatologist in our primary care group. This dermatologist would be happy to see her...in March. Through those and other appointments, Cathy had been unable to have her psoriasis addressed to her satisfaction.
This week she had follow ups with her outstanding oncologist and her bff breast surgeon. Both doctors, independently and unsolicited from one another asked her about her vitiligo. Vitiligo? Yes, that looks like vitiligo. They could see how it would be mistaken for psoriasis because it is flaky, but clearly there is a loss of pigment. How could two doctors who aren't dermatologists get this, but the dermatologists couldn't?
Cathy had been resistant to calling my awesome dermatologist because, frankly, he's old. He's the best in Cincinnati, but he's old. She called. "I'm sorry, he's not taking any more appointments. He'll be retired as of January 1." That was predictable. All of Cathy's favorite stuff gets discontinued!
So the next day Cathy saw her excellent rheumatologist who also mentioned her vitiligo. The rheumatologist offered to get her an earlier appointment with the dermatologist in our primary care group...next week! The rheumatologist predicted that Cathy will have to have a biopsy to confirm vitiligo, but that there could be some successful treatment options ahead for her.
This has been a difficult process. I'm thankful that all of this has been related to a relatively minor situation. It would be much more distressing to be misdiagnosed and mistrusting of our doctors if this were a life altering health situation. Yet, I know that is the case for many people.
It's difficult to find the right doctor. Credible recommendations and references are hard to come by. Sometimes you find a great doctor who just isn't right for you. Many times you have to trust your gut. Thankfully, Cathy is really good at reading people and can tell almost instantly if the situation is right. I'm thankful for our doctors and I'm thankful for Cathy's perceptive people skills.
Thursday, October 17, 2013
Focus on the Front End
There's been a post brewing inside me that hasn't come into being because I don't have the right words. The words aren't there because the thoughts aren't fully formed yet either. I have three children who are going to grow up living in this world whether I like it or not. The world, I mean, whether or not I like the world. I do like the world. I think it is good. God made some pretty cool stuff. We've messed up a lot of it, but we've done a lot of good, too. I don't agree with all of it, though.
I hope that my children never have to deal with cancers of their own. If they do, I hope that it is so far in the future that an inconceivably benign treatment exists by that time. What I would like more than that, though, is that cancer not be an issue. Not for them or for anyone else. Herein lies the crux of the post that I can't quite get together yet.
We (citizens of the world) spend a lot of time, energy, and money on finding a cure for cancer. We absolutely should continue to do that because people are going to continue to get cancer and will need treatments. All of these resources are going toward the back end of the disease - fixing what is already broken.
What if we focused on the front end? What if we gave as much time, energy, and money preventing the body from being broken in the first place? This is a tangled subject, thus my impasse.
Stay tuned...
I hope that my children never have to deal with cancers of their own. If they do, I hope that it is so far in the future that an inconceivably benign treatment exists by that time. What I would like more than that, though, is that cancer not be an issue. Not for them or for anyone else. Herein lies the crux of the post that I can't quite get together yet.
We (citizens of the world) spend a lot of time, energy, and money on finding a cure for cancer. We absolutely should continue to do that because people are going to continue to get cancer and will need treatments. All of these resources are going toward the back end of the disease - fixing what is already broken.
What if we focused on the front end? What if we gave as much time, energy, and money preventing the body from being broken in the first place? This is a tangled subject, thus my impasse.
Stay tuned...
Sunday, October 6, 2013
Genetics
A lot has happened during my blogosphere hiatus. Perhaps sometime I'll write about our summer adventures, but not today. This post is going to deal with the impact of knowing genetic information. I'm not going to try to unpack the ethical or political aspects of the unraveling of the genetic code. Instead I'm just going to chronicle the chain of events that has extended from knowing the results of genetic information. We'll start with some backstory and move on to current events.
Shortly after Cathy's diagnosis she was genetically tested to determine if she carried the BRCA gene mutations. When women as young as Cathy are diagnosed with cancer this is a relatively common diagnostic step and one that is helpful in determining a course of treatment. It was determined that she is positive for the BRCA1 gene mutation.
This knowledge, along with the triple negative typing of the cancer meant that a bilateral mastectomy would be the best course of treatment to safeguard against recurrence. It also meant that at some point having her ovaries and fallopian tubes removed would be a good idea because the BRCA1 gene mutation is also linked with an increased risk of ovarian cancer.
Gene mutations are often hereditary. Cathy's parents were tested to determine if one of them was the transmitter. We learned that Cathy's mom, Jayne, is positive for the BRCA1 mutation as well. Jayne did a little more research on her family history and learned that her grandmother had died of a cancer that looked to have originated in her ovaries. After much medical counseling, Jayne decided to take some preventative actions.
Jayne began with surgical removal of her ovaries and fallopian tubes. Pathology indicated that there was cancer present in both tubes and in one ovary. Fortunately, due to the timing of the surgery, no further treatment was necessary for Jayne. Had she waited even a few more months to do the PREVENTATIVE surgery, her course of treatment would have been much more extensive. If she had not had the surgery and waited until she was symptomatic the odds of successful treatment would have decreased greatly. Wwwsshheww!
Jayne also had a prophylactic mastectomy to prevent occurrence in the breast. In a few hours she is having a second surgery to clear up some complications with the first surgery. Prayers for her would be appreciated, I'm sure!
This past week, Cathy met with a gynecological oncologist to discuss future surgery. Cathy will have her ovaries and tubes removed in the spring or summer as a preventative measure against ovarian cancer. She has not decided if that surgery will include a hysterectomy, as well. We will need to do some further reading about the roll of the uterus in BRCA related cancers and the long term effects of that surgery before she decides.
I can't speak about the ethics of genetic testing. I didn't really even think about it when Cathy was tested. At that time it was just another tool in the arsenal to fight the disease that she had. I do know that the results of the genetic testing prompted a surgery that likely saved her mom's life. I also know that prophylactic surgeries for Cathy and Jayne will take risks in the 80+% range down to single digits.
People often ask if we will have our children tested, especially Clara. My hope is that medical practice and the life practices of our society in general will change to a point that makes genetic testing unnecessary by the time it would be an issue for them. However, when Clara or the boys reach an age when it would be an issue or their genes might be passed on to children of their own we will probably have to discuss that if we don't have cures or better insight into cancer prevention.
Shortly after Cathy's diagnosis she was genetically tested to determine if she carried the BRCA gene mutations. When women as young as Cathy are diagnosed with cancer this is a relatively common diagnostic step and one that is helpful in determining a course of treatment. It was determined that she is positive for the BRCA1 gene mutation.
This knowledge, along with the triple negative typing of the cancer meant that a bilateral mastectomy would be the best course of treatment to safeguard against recurrence. It also meant that at some point having her ovaries and fallopian tubes removed would be a good idea because the BRCA1 gene mutation is also linked with an increased risk of ovarian cancer.
Gene mutations are often hereditary. Cathy's parents were tested to determine if one of them was the transmitter. We learned that Cathy's mom, Jayne, is positive for the BRCA1 mutation as well. Jayne did a little more research on her family history and learned that her grandmother had died of a cancer that looked to have originated in her ovaries. After much medical counseling, Jayne decided to take some preventative actions.
Jayne began with surgical removal of her ovaries and fallopian tubes. Pathology indicated that there was cancer present in both tubes and in one ovary. Fortunately, due to the timing of the surgery, no further treatment was necessary for Jayne. Had she waited even a few more months to do the PREVENTATIVE surgery, her course of treatment would have been much more extensive. If she had not had the surgery and waited until she was symptomatic the odds of successful treatment would have decreased greatly. Wwwsshheww!
Jayne also had a prophylactic mastectomy to prevent occurrence in the breast. In a few hours she is having a second surgery to clear up some complications with the first surgery. Prayers for her would be appreciated, I'm sure!
This past week, Cathy met with a gynecological oncologist to discuss future surgery. Cathy will have her ovaries and tubes removed in the spring or summer as a preventative measure against ovarian cancer. She has not decided if that surgery will include a hysterectomy, as well. We will need to do some further reading about the roll of the uterus in BRCA related cancers and the long term effects of that surgery before she decides.
I can't speak about the ethics of genetic testing. I didn't really even think about it when Cathy was tested. At that time it was just another tool in the arsenal to fight the disease that she had. I do know that the results of the genetic testing prompted a surgery that likely saved her mom's life. I also know that prophylactic surgeries for Cathy and Jayne will take risks in the 80+% range down to single digits.
People often ask if we will have our children tested, especially Clara. My hope is that medical practice and the life practices of our society in general will change to a point that makes genetic testing unnecessary by the time it would be an issue for them. However, when Clara or the boys reach an age when it would be an issue or their genes might be passed on to children of their own we will probably have to discuss that if we don't have cures or better insight into cancer prevention.
Friday, October 4, 2013
No News Is Good News
I was a young driver just before the days of cellphones. In high school and college I drove long distances pretty frequently and I notoriously forgot to call my parents when I had arrived at my destination. Doubtless, they were left to wonder if I was safe or dead along the road somewhere. I know that my mindlessness caused them stress, but they would always say, "No news is good news."
The last four months have been a break from constantly thinking about cancer. During that time I've thought about cancer frequently, but I needed to have some time that it wasn't at the forefront of my mind. So I didn't write. For me, writing meant that I was fighting. Iwanted needed to take a break from the fight and enjoy the life that God had given back to us.
All of you who love Cathy can assume that no news is good news. She is cancer free, not dealing with major implant issues, and regaining strength! Yoga has been an amazing therapy for Cathy. She still suffers from some pretty painful arthritis, particularly in the hands/wrists and lower legs/feet. Her psoriasis is still in high gear and we believe the two might be related. No solutions for that right now, but yoga is the best way for her to feel better.
In general, things are good. Clara is two today. It gives some perspective on how long this fight has gone on. She was 7 months at diagnosis. My girls have been through a lot and inspire me daily.
The last four months have been a break from constantly thinking about cancer. During that time I've thought about cancer frequently, but I needed to have some time that it wasn't at the forefront of my mind. So I didn't write. For me, writing meant that I was fighting. I
All of you who love Cathy can assume that no news is good news. She is cancer free, not dealing with major implant issues, and regaining strength! Yoga has been an amazing therapy for Cathy. She still suffers from some pretty painful arthritis, particularly in the hands/wrists and lower legs/feet. Her psoriasis is still in high gear and we believe the two might be related. No solutions for that right now, but yoga is the best way for her to feel better.
In general, things are good. Clara is two today. It gives some perspective on how long this fight has gone on. She was 7 months at diagnosis. My girls have been through a lot and inspire me daily.
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