Not too long after Cathy completed her chemotherapy treatment, her psoriasis returned just as strong as before cancer or perhaps a little stronger. While chemo cleared up Cathy's psoriasis during treatment, Dr. Drosick told us that it is common for psoriatic chemo patients to have a flare-up of psoriasis that is pretty powerful after chemo is finished. We had expected its return. We also hoped that it would settle down over time. As Cathy's psoriasis worsened, she began to develop some joint pain, as well. Cathy's hands and elbows hurt, then her knees, hips, ankles, and shoulders. The logical connection that I made (perhaps mistakenly) was psoriatic arthritis. We thought that maybe this would settle down also.
Well, the joint pain is worsening and the vision in Cathy's right eye has begun to blur a little bit. As the symptoms increased we felt the need for a little research and some doctors' appointments. The doctors' appointments haven't happened, yet, but the research has yielded some interesting information. We both encountered many stories written by women of silicone implants triggering autoimmune responses. We read about blurry vision, joint pain, skin problems, and saw scary words like rheumatoid arthritis, fibromyalgia, and lupus. Most of these stories indicated that within two years of the implants being removed the autoimmune disease vanished.
Further investigation led us to many research studies that have shown no connection between silicone implants and autoimmune disease. Many of these studies included implants made of silicone gel, as well as saline implants encased in silicone. While the research is pretty conclusive on this subject, the anecdotal tales of women with horrible autoimmune disease are pretty convincing.
We have a lot more research to do and a lot to learn before Cathy's surgery on April 23. Any prayers for pain relief and improved vision would be appreciated. Prayers for insight and guidance in decision making would also be appreciated. Any readers in the medical field who could guide me toward respected and reliable medical journals that would help me gather information are welcome. It's hard for someone outside the medical profession to know what research deserves merit.
Tuesday, March 19, 2013
Tuesday, March 12, 2013
The Daily Grind
It's been almost a month since my last post. While it has been my intention to keep this focused mostly on Cathy, my own "stuff" has prevented me from writing. The primary obstacle to regular posts is all the stuff we do every day. Carving out regular time to write is very difficult! The daily grind has become my regular excuse for not writing, or exercising as much as I'd like, or doing a whole host of other valuable things that don't fit into the category of primary immediacy. I tell Cathy all the time, "When I have the energy I don't have the time and when I have the time I don't have the energy." That statement applies to a dozen or more things.
My other main obstacle to blogging has been the same issue that's prevented me from journaling my whole life. A lot of times I just don't have anything worth saying! I subscribe to the philosophy that I should say what I mean and mean what I say. Most times I only talk when I feel like I have something that is important for others to hear. If it's not important, I usually just keep my mouth shut. This approach to life generally serves me well, but sometimes it's a social handicap.
On to the purpose of the blog in the first place - Cathy. Cathy is scheduled for surgery on April 23. At that time she will have a capsulectomy and a replacement of the implants. Her pain is stabilized or decreased slightly. I think there are two factors at play there: (1) I don't think the capsule is hardening or contracting farther, and (2) Cathy has been stretching, doing yoga, and exercising pretty regularly. Even though the capsule is pulling on the muscles, her muscles have much better strength and flexibility than they did a month or so ago.
Cathy seems less discouraged by having to go back in for more surgery. She's more just ready to do it and move on, I think. Her comfort has increased to a point that things seem to be more like normal. Like normal is what has allowed the daily grind to take a stronger hold on both of us. This next surgery will slow down the grind a bit and bring the new normal back to the forefront of our lives. The new normal will be a topic of discussion for another day.
Peace to you all!
My other main obstacle to blogging has been the same issue that's prevented me from journaling my whole life. A lot of times I just don't have anything worth saying! I subscribe to the philosophy that I should say what I mean and mean what I say. Most times I only talk when I feel like I have something that is important for others to hear. If it's not important, I usually just keep my mouth shut. This approach to life generally serves me well, but sometimes it's a social handicap.
On to the purpose of the blog in the first place - Cathy. Cathy is scheduled for surgery on April 23. At that time she will have a capsulectomy and a replacement of the implants. Her pain is stabilized or decreased slightly. I think there are two factors at play there: (1) I don't think the capsule is hardening or contracting farther, and (2) Cathy has been stretching, doing yoga, and exercising pretty regularly. Even though the capsule is pulling on the muscles, her muscles have much better strength and flexibility than they did a month or so ago.
Cathy seems less discouraged by having to go back in for more surgery. She's more just ready to do it and move on, I think. Her comfort has increased to a point that things seem to be more like normal. Like normal is what has allowed the daily grind to take a stronger hold on both of us. This next surgery will slow down the grind a bit and bring the new normal back to the forefront of our lives. The new normal will be a topic of discussion for another day.
Peace to you all!
Sunday, February 17, 2013
A Little Setback
We have to take the bad with the good, right? Cathy had a little setback this week. It's not a cancer related setback, but a reconstruction related setback. As she has been healing from reconstruction she has been feeling a particularly powerful tightness on her right side. The left side, which is ironically the side that was troublesome with the expanders, has felt pretty good. After seeing Dr. Butterfield, we've learned that Cathy has developed capsular contracture.
Capsular contracture is a condition that deals with the scar tissue that the human body develops. Because the implant is a foreign body, Cathy's body has developed a capsule of scar tissue that surrounds the implant to wall it off from the rest of her body. This process is normal. It's one of the body's defense mechanisms to fight off foreign invaders. In her left breast, the capsule of scar tissue is thin, light, and supple, allowing for normal healing. However, the capsule in her right breast is tightening and forcing the implant to shift in position. The capsule of scar tissue is connected with other tissue, like skin and muscle, so as the capsule contracts it pulls on the tissue to which it is connected, causing some considerable discomfort.
There is a grading system for degrees of capsular contracture. It's called the Baker scale and it looks like this:
Capsular contracture is a condition that deals with the scar tissue that the human body develops. Because the implant is a foreign body, Cathy's body has developed a capsule of scar tissue that surrounds the implant to wall it off from the rest of her body. This process is normal. It's one of the body's defense mechanisms to fight off foreign invaders. In her left breast, the capsule of scar tissue is thin, light, and supple, allowing for normal healing. However, the capsule in her right breast is tightening and forcing the implant to shift in position. The capsule of scar tissue is connected with other tissue, like skin and muscle, so as the capsule contracts it pulls on the tissue to which it is connected, causing some considerable discomfort.
There is a grading system for degrees of capsular contracture. It's called the Baker scale and it looks like this:
- Grade I — the breast is normally soft and appears natural in size and shape
- Grade II — the breast is a little firm, but appears normal
- Grade III — the breast is firm and appears abnormal
- Grade IV — the breast is hard, painful to the touch, and appears abnormal
In Cathy's instance, her contracture is a Grade IV. So, all of this boils down to another surgery. Sometime in April, Cathy will have to have a capsulectomy and then have her implants replaced. The silicone implants will be replaced by textured saline implants that will reduce the likelihood of another capsular contracture. The bad news is that once significant capsular contracture occurs the odds that it will recur are about 50/50. We're praying that Cathy will be on the good side of that 50/50. We're hoping things will turn out well, but if they don't the only further options are another surgery with no reconstruction or microvascular surgery using tissue from her buttocks. Neither of those options is preferable.
Sunday, February 10, 2013
Lagging Behind
It's seems that it's been quite a while since my last post. When I was a teenager and first learning to drive I would always, always forget to call home when I arrived at my destination to let my parents know I had arrived safely. Each time I returned home after forgetting to call they would be upset with me, but then they would say that they supposed that no news was good news. Not much has changed with me. I still forget to check in. I'm pretty surprised that I've made as many blog posts as I have. At any rate, no news is good news, generally. Cathy is still having a little bit of pain in her chest and some muscle tightness. She is a little concerned about not healing in a symmetrical fashion. She'll talk to Dr. Butterfield this week and see what she thinks. Aside from that, I really just wanted to check in with all of you because I know that there are many regular readers. I will continue to post even though I've lagged behind. I sincerely appreciate your devotion to Cathy and your consistency in "checking the blog." Please keep looking for more posts. They will come!
Monday, January 28, 2013
Going Solo
Last week Cathy made it through her first week on her own with Clara. Entering week four after surgery, Cathy is able to lift Clara to the high chair for meals and to the crib for nap time. Although she shouldn't and it causes her pain, Cathy will carry Clara around from time to time. Fear not, Cathy has been properly scolded by her overprotective husband. Even though she knows I don't have any expectations for work to be done around the house, she likes to do it anyway and sometimes it's easier to do the work when she's carrying Clara. Cathy, I know you're reading! Nothing is so important that it can't wait until I get home to take care of Clara (danger situations notwithstanding). I love you!
All kidding aside, it is wonderful to see Clara reach for Cathy and for Cathy to be able to pick her up. It's a sweet reward after all the hardship hearkening back to the overnight weaning and Clara's cries for Cathy. Trials and blessings.
All kidding aside, it is wonderful to see Clara reach for Cathy and for Cathy to be able to pick her up. It's a sweet reward after all the hardship hearkening back to the overnight weaning and Clara's cries for Cathy. Trials and blessings.
Monday, January 21, 2013
LiveStrong
I'm not a Lance Armstrong apologist. It seems that he has enough apologizing to do on his own and doesn't really need anybody's help. However, I like to ride my bike. In fact, I've ridden a lot of miles. I even ride a Trek bike, like the one Lance rode in his first Tour de France victory in 1999 (but I didn't buy it because of him - it was the cheapest carbon bike I could find). I rode my bike in LiveStrong fundraising events in 2010 and 2011. I had cancer, my wife HAD cancer, my brother had cancer, my sister-in-law had cancer. I've read a lot of books about Lance because he had cancer and he likes to ride bikes also. For some reason that I can't quite explain I have an intricate and tangled psychological/emotional connection with Lance Armstrong. Understanding that connection would probably take many hours and involve a leather couch and some people with PhD and/or MD after their names. But I'm not a Lance Armstrong apologist.
There is an important distinction that needs to be made between Lance Armstrong's athletic activities, his self-acknowledged flaws, and the LiveStrong Foundation that he founded. Perhaps because I've read quite a few books about Lance I wasn't surprised by anything he said in the infamous interview with Oprah. For a number of years I've also been able to compartmentalize my feelings about Lance as a competitor, a human being, and a cancer fighter. Oprah and Lance came to the conclusion that he is a bully - or maybe more appropriately - exhibits bullying behaviors. There are very few times that bullying is an acceptable behavior. Bike racers don't need to be bullied. Reporters don't need to be bullied. Friends don't need to be bullied. But, cancer does need a bully and Lance is that bully.
The disease needs to be pushed around and shown who's boss. Unfortunately, sometimes hospitals, doctors, and insurance companies need that, too. We have been very fortunate that in Cathy's experience with cancer, as well my own, we have encountered excellent doctors, competent hospitals, and sufficient insurance. Our experience is not always the norm. That is where LiveStrong comes in.
LiveStrong is not out to find a cure for cancer. LiveStrong's aim is not to raise money to fund research. LiveStrong works to support people who are struggling with the disease. This includes those who are fighting cancer and the people who care for them. LiveStrong's mission is to assist people in accessing the resources they need to win the fight. Each cancer patient's journey is different and requires access to varying resources, which might include competent doctors, insurance claims, treatment plans, clinical trials, alternative therapies, financial assistance, understanding patients' rights, etc.
Cathy and I remarked to one another on numerous occasions that we could not imagine going through this disease without our network of insurance, doctors, family, neighbors, work flexibility, and above average intelligence. The sheer amount of information that is necessary to digest is daunting. The number of choices that need to be made, often on a short time schedule, can cause extreme stress and anxiety. When you factor in the emotions that go along with a cancer diagnosis, it's easy to make life altering mistakes. LiveStrong works to help make all of this more manageable.
LiveStrong offers a number of free services, but the one that I find most universal is the Guidebook and Planner/Journal. I say that it's universal because it works pretty well in helping someone with any type of cancer organize and process the mountains of information that are part of the fight. LiveStrong will ship a free Guidebook and Planner/Journal to anyone who requests it.
The Guidebook provides all kinds of information that helps patients and caregivers plan the fight and make decisions necessary to win the fight. The Guidebook contains a lot of "well, I never thought of that" information and scenarios, as well as some great starting points for deeper research into the billions of facets of dealing with the disease.
The Planner/Journal is organized in the same format as the Guidebook, but it provides questions to ask doctors, spaces to write answers, forms to track treatments, folders to place important information, and charts to note progress.
These resources are indescribably helpful. Every cancer patient needs these books to understand the decisions that lie ahead and organize the battle plan. In addition to these books, LiveStrong provides face-to-face services to assist in the same manner. It is my belief that when Lance had cancer he refused to be a victim of the disease. He also refused to be a victim of the treatment. Many cancer treatments are vicious and costly on many fronts. An informed and organized battle plan can maximize the damage to cancer and minimize the damage to the patient. In a nutshell, this has been Lance's mission with LiveStrong.
I hope that the people who have supported LiveStrong in the past will continue to support the organization. I also hope that the businesses that have contributed to the mission will see that their money has provided more that the almighty "return on investment". Personally, I have supported businesses that have supported LiveStrong because I know that the real ROI is lives lived. Over the past 11 years I have been able to separate Lance Armstrong, the cyclist/doper/cheater/bully/liar from Lance Armstrong, the founder of an organization that has improved the lives of millions. I hope others are able to do the same because LiveStrong is important regardless of the transgressions of its founder.
There is an important distinction that needs to be made between Lance Armstrong's athletic activities, his self-acknowledged flaws, and the LiveStrong Foundation that he founded. Perhaps because I've read quite a few books about Lance I wasn't surprised by anything he said in the infamous interview with Oprah. For a number of years I've also been able to compartmentalize my feelings about Lance as a competitor, a human being, and a cancer fighter. Oprah and Lance came to the conclusion that he is a bully - or maybe more appropriately - exhibits bullying behaviors. There are very few times that bullying is an acceptable behavior. Bike racers don't need to be bullied. Reporters don't need to be bullied. Friends don't need to be bullied. But, cancer does need a bully and Lance is that bully.
The disease needs to be pushed around and shown who's boss. Unfortunately, sometimes hospitals, doctors, and insurance companies need that, too. We have been very fortunate that in Cathy's experience with cancer, as well my own, we have encountered excellent doctors, competent hospitals, and sufficient insurance. Our experience is not always the norm. That is where LiveStrong comes in.
LiveStrong is not out to find a cure for cancer. LiveStrong's aim is not to raise money to fund research. LiveStrong works to support people who are struggling with the disease. This includes those who are fighting cancer and the people who care for them. LiveStrong's mission is to assist people in accessing the resources they need to win the fight. Each cancer patient's journey is different and requires access to varying resources, which might include competent doctors, insurance claims, treatment plans, clinical trials, alternative therapies, financial assistance, understanding patients' rights, etc.
Cathy and I remarked to one another on numerous occasions that we could not imagine going through this disease without our network of insurance, doctors, family, neighbors, work flexibility, and above average intelligence. The sheer amount of information that is necessary to digest is daunting. The number of choices that need to be made, often on a short time schedule, can cause extreme stress and anxiety. When you factor in the emotions that go along with a cancer diagnosis, it's easy to make life altering mistakes. LiveStrong works to help make all of this more manageable.
LiveStrong offers a number of free services, but the one that I find most universal is the Guidebook and Planner/Journal. I say that it's universal because it works pretty well in helping someone with any type of cancer organize and process the mountains of information that are part of the fight. LiveStrong will ship a free Guidebook and Planner/Journal to anyone who requests it.
The Guidebook provides all kinds of information that helps patients and caregivers plan the fight and make decisions necessary to win the fight. The Guidebook contains a lot of "well, I never thought of that" information and scenarios, as well as some great starting points for deeper research into the billions of facets of dealing with the disease.
The Planner/Journal is organized in the same format as the Guidebook, but it provides questions to ask doctors, spaces to write answers, forms to track treatments, folders to place important information, and charts to note progress.
These resources are indescribably helpful. Every cancer patient needs these books to understand the decisions that lie ahead and organize the battle plan. In addition to these books, LiveStrong provides face-to-face services to assist in the same manner. It is my belief that when Lance had cancer he refused to be a victim of the disease. He also refused to be a victim of the treatment. Many cancer treatments are vicious and costly on many fronts. An informed and organized battle plan can maximize the damage to cancer and minimize the damage to the patient. In a nutshell, this has been Lance's mission with LiveStrong.
I hope that the people who have supported LiveStrong in the past will continue to support the organization. I also hope that the businesses that have contributed to the mission will see that their money has provided more that the almighty "return on investment". Personally, I have supported businesses that have supported LiveStrong because I know that the real ROI is lives lived. Over the past 11 years I have been able to separate Lance Armstrong, the cyclist/doper/cheater/bully/liar from Lance Armstrong, the founder of an organization that has improved the lives of millions. I hope others are able to do the same because LiveStrong is important regardless of the transgressions of its founder.
Wednesday, January 16, 2013
Good Things
Cathy's appointment with Dr. Drosick was a good one. It was a 3 month (!) follow up from the end of chemo. Dr. Drosick's optimism really bolstered us. It's not that we were down, but it always feels good to have doctors tell you that the odds are in your favor. He told us that, statistically speaking, it is highly unlikely for Cathy to have a recurrence based on her response to chemo. Happy news! We will still continue to be vigilant, especially with exercise and diet. Cathy has already increased her walking and stretching, with an aim toward yoga and other cardio and muscular conditioning. She's feeling well enough to walk 45 minutes at a time. She still has some pain and discomfort in her chest, depending upon how she moves. Cathy is only taking one Tylenol at night and nothing in the day, having finished her antibiotic course last week. As far as eating goes, we are focusing on a regular healthy diet with emphasis on vegetables and fruits, lean meats and whole grains. We still eat organic when possible, but we pretty much did that before cancer anyway. Eating the right stuff is only really difficult when our schedules get crazy and we don't plan far enough ahead. It's also tough when the sweet tooth strikes, Cathy and I both have a pretty powerful sweet tooth. We're finding alternatives, though, like dark chocolate with high cocoa percentage, which is loaded with antioxidants. One little square of dark chocolate with some almond or peanut butter goes a long way!
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