HAIR!
After months of losing hair, where I wasn't already hairless, I suddenly realize that I'm growing hair. It was first noticable around the first of June. Fine, pale baby hair at first, but a definate promise that baldness would not be permanent. Another week or two passed and, with my arm in the afternoon sunlight, I saw millimeter long hair everywhere.
I suppose everyone is thrilled when they see the first signs of hair re-growth. Female and child baldness is the signature of cancer. Banish bald! Grow hair and look healthy. Will I want my new hair kept short or will I let it grow and grow? Will it be exactly like before, as my oncologists says, or will it be quite different, as the chemo nurses have reported?
This Tuesday is my LAST SCHEDULED CHEMO, a day I've long happily anticipated, of course. This third of three chemo drugs has not been nearly as diffcult as the earlier ones but even it makes me sick for a day or two and fatigued for days afterward. Not sure how I'll react to the radiation therapy which comes next, but I am ready to get past this phase.
Reaching this milestone has me thinking about what it will be like to complete the chemo and radiation. Will I feel like I'm living my normal life again? Will I have a nagging, dark worry always with me? Will the worry hit only now and then in dark moods? Or will it hit any time I have an illness or an unfamiliar pain?
Will it be possible to forget about it? The fact I'll have another daily pill will be a constant reminder, I suppose. My goal will be to forget about it. I'll concentrate on building back my strength and endurance, eating a better-than-ever healthy diet, winning those treasured not guilty verdicts and remembering to treasure the life I have and the people I love.
Sunday, June 23, 2013
Monday, May 27, 2013
it's not patrick: I am disappointed that I have not kept up with reg...
it's not patrick: I am disappointed that I have not kept up with reg...: I am disappointed that I have not kept up with regular posts to this blog. I'll try again. My "treatment" has proceeded as p...
Sunday, May 26, 2013
I am disappointed that I have not kept up with regular posts to this blog. I'll try again.
My "treatment" has proceeded as planned -- every other week administrations of chemo, three different drugs, each of which is given 4 times. The first drug, which cancer patients commonly call "the red devil," was the worst. I had far more nausea and body pain with it than with drug number two, taxol. Normally, I've taken treatments on Mondays. The day following has not been too bad, but then I have 4 to 5 days during which I am very sick and can do very little. I miss 3 or 4 days of work and stay in bed almost the entire time. The every other week schedule means that, by the time I'm feeling fairly well and somewhat approaching normal, it's time to go back for another poisoning. Not fun, but necessary, I have to keep reminding myself. I'm taking the third drug now and have 3 more administrations to go. Then, I'll have 6 weeks of daily radiation therapy (5 days a week).
As this has gone on, I have increasing difficulty with diminishing strength and endurance. I was not in great physical condition when this began, but I was not weak compared to most women my age. Not so now. My ability to do even minor work is practically gone. I have to take frequent breaks. I'm strictly the assistant on any job -- the one who holds the screws and hands them to the one doing the work! I am concerned about how long it will take for me to get back in shape when this is over. I'd rather have my strength and endurance than my hair, so I've asked my body to put emphasis on building strength, not growing hair!
Some people have kindly told me I'm "brave" as I'm going through this process. I can't comprehend it that way. It is simply necessary to enhance the likelihood that I will not get metastatic cancer later. Comparing my experience to that of others convinces me I've been fortunate. Many people are much sicker. Some are unable to work at all during their chemo. Some of the side-effects are quite nasty -- open, bleeding mouth sores, digestive system "difficulty," and other things I have not experienced. I try to remember to be grateful for all the good days I have during this ordeal.
I have health insurance through my work for the State of Florida, and there has been no difficulty getting the treatments I need. The costs to the insurance company have been astonishing and continue to rise. I try not to think about what happens to people with such a disease who are not insured. You can't get chemotherapy at the ER. Would an uninsured person be able to find anyone to treat them? The costs of the drugs alone is daunting. I get an injection 24 hours after each treatment which boosts production of white blood cells, which are wiped out by the chemotherapy drugs. The insurance is billed over $5000 for each of those injections. (Without the insurance contract discount, the cost would be even higher.) Because of the injections, my white blood cell count has remained relatively high. I haven't caught any diseases so it seems to have worked. Imagine the costs of just that drug. Twelve injections at even $5000 each is $60,000. Can an uninsured person pay for that drug? If, and that is a big IF, an uninsured person could get chemotherapy, would they also be able to get these injections? If not, they would major problems with immunity. Infectious disease would be a strong likelihood. ER visits and hospitalizations would surely follow and could be even more expensive, not to mention potentially life-threatening. It is so very fortunate for me that I did not decide to go into private practice, but have staying with my job as an assistant public defender, paid by the State of Florida and a part state's group insurance. I am lucky again.
My "treatment" has proceeded as planned -- every other week administrations of chemo, three different drugs, each of which is given 4 times. The first drug, which cancer patients commonly call "the red devil," was the worst. I had far more nausea and body pain with it than with drug number two, taxol. Normally, I've taken treatments on Mondays. The day following has not been too bad, but then I have 4 to 5 days during which I am very sick and can do very little. I miss 3 or 4 days of work and stay in bed almost the entire time. The every other week schedule means that, by the time I'm feeling fairly well and somewhat approaching normal, it's time to go back for another poisoning. Not fun, but necessary, I have to keep reminding myself. I'm taking the third drug now and have 3 more administrations to go. Then, I'll have 6 weeks of daily radiation therapy (5 days a week).
As this has gone on, I have increasing difficulty with diminishing strength and endurance. I was not in great physical condition when this began, but I was not weak compared to most women my age. Not so now. My ability to do even minor work is practically gone. I have to take frequent breaks. I'm strictly the assistant on any job -- the one who holds the screws and hands them to the one doing the work! I am concerned about how long it will take for me to get back in shape when this is over. I'd rather have my strength and endurance than my hair, so I've asked my body to put emphasis on building strength, not growing hair!
Some people have kindly told me I'm "brave" as I'm going through this process. I can't comprehend it that way. It is simply necessary to enhance the likelihood that I will not get metastatic cancer later. Comparing my experience to that of others convinces me I've been fortunate. Many people are much sicker. Some are unable to work at all during their chemo. Some of the side-effects are quite nasty -- open, bleeding mouth sores, digestive system "difficulty," and other things I have not experienced. I try to remember to be grateful for all the good days I have during this ordeal.
I have health insurance through my work for the State of Florida, and there has been no difficulty getting the treatments I need. The costs to the insurance company have been astonishing and continue to rise. I try not to think about what happens to people with such a disease who are not insured. You can't get chemotherapy at the ER. Would an uninsured person be able to find anyone to treat them? The costs of the drugs alone is daunting. I get an injection 24 hours after each treatment which boosts production of white blood cells, which are wiped out by the chemotherapy drugs. The insurance is billed over $5000 for each of those injections. (Without the insurance contract discount, the cost would be even higher.) Because of the injections, my white blood cell count has remained relatively high. I haven't caught any diseases so it seems to have worked. Imagine the costs of just that drug. Twelve injections at even $5000 each is $60,000. Can an uninsured person pay for that drug? If, and that is a big IF, an uninsured person could get chemotherapy, would they also be able to get these injections? If not, they would major problems with immunity. Infectious disease would be a strong likelihood. ER visits and hospitalizations would surely follow and could be even more expensive, not to mention potentially life-threatening. It is so very fortunate for me that I did not decide to go into private practice, but have staying with my job as an assistant public defender, paid by the State of Florida and a part state's group insurance. I am lucky again.
Monday, January 14, 2013
Thursday January 10, I received the first of 12 planned chemo treatments. It is a weird and uncomfortable mental process to realize that you are going to submit yourself to regular poisonings. I am trying to think of it like the surgery -- a necessary requirement, no questions to be asked, no looking back. Clearly, the statistics show that a person with my type of cancer has a far better chance of not getting metastatic disease when radiation, chemotherapy and hormonal therapy are all used in addition to surgery. It is, as the saying goes, "a no-brainer."
I was happy to learn that each patient has a particular nurse who will consistently work the case. "My" nurse was formerly a legal assistant for several years. She worked for two of the large personal injury law firms in Pensacola and her daughter is in law school. I think the office paired us intentionally.
Of course, I was worried about the nausea that I've always associated with chemotherapy. My oncologist and others familiar with cancer treatment have been encouraging, suggesting that I wouldn't have any problems. There were two separate anti-nausea medications given prior to the active drug, along with two prescription pills to be taken starting the next day. Chris and I were both hungry, so we stopped on the way home to buy sandwiches and pick up the pills.
After the approximately 2-hour process, I felt fine, but sleepy, so I retired to bed after eating my sandwich. When I stirred a few hours later, I ached all over. My head hurt, my back hurt, my neck hurt, my shoulders hurt. Yuck. I took 2 acetominephen and tried to go back to sleep. However, I did not feel nauseated! By Friday morning, the aching was much reduced. I got up and went to work. I took a precautionary anti-nausea pill in the morning, but felt fine all day. Great, I thought. Those anti-nausea medications really are wonderful.
By Friday evening, I was a bit tired. I went to sleep early only to wake up a few hours later feeling very sick with nausea. I took another anti-nausea pill and hoped to keep it down long enough for it to work. Saturday was a blur of aching, nausea, pills, sipping water and ginger tea, and trying to sleep between bouts of very uncomfortable nausea. Sunday started just as bad, but the nausea eased a bit through the day (I even watched some football, which is not the highest priority for me.) Finally, on Monday morning, I felt OK again. Not entirely normal, but OK. I'll take it -- with gratitude.
.
I was happy to learn that each patient has a particular nurse who will consistently work the case. "My" nurse was formerly a legal assistant for several years. She worked for two of the large personal injury law firms in Pensacola and her daughter is in law school. I think the office paired us intentionally.
Of course, I was worried about the nausea that I've always associated with chemotherapy. My oncologist and others familiar with cancer treatment have been encouraging, suggesting that I wouldn't have any problems. There were two separate anti-nausea medications given prior to the active drug, along with two prescription pills to be taken starting the next day. Chris and I were both hungry, so we stopped on the way home to buy sandwiches and pick up the pills.
After the approximately 2-hour process, I felt fine, but sleepy, so I retired to bed after eating my sandwich. When I stirred a few hours later, I ached all over. My head hurt, my back hurt, my neck hurt, my shoulders hurt. Yuck. I took 2 acetominephen and tried to go back to sleep. However, I did not feel nauseated! By Friday morning, the aching was much reduced. I got up and went to work. I took a precautionary anti-nausea pill in the morning, but felt fine all day. Great, I thought. Those anti-nausea medications really are wonderful.
By Friday evening, I was a bit tired. I went to sleep early only to wake up a few hours later feeling very sick with nausea. I took another anti-nausea pill and hoped to keep it down long enough for it to work. Saturday was a blur of aching, nausea, pills, sipping water and ginger tea, and trying to sleep between bouts of very uncomfortable nausea. Sunday started just as bad, but the nausea eased a bit through the day (I even watched some football, which is not the highest priority for me.) Finally, on Monday morning, I felt OK again. Not entirely normal, but OK. I'll take it -- with gratitude.
.
Sunday, December 23, 2012
I'm not bossy, I just know what YOU should be doing.
 |
| Me and my accomodating surgeon, Dr. Comitalo |
For those lucky enough not to have experienced it, I'll explain that the surgeon left drains penetrating my skin. Each consists of a sturdy bag with a valve and a long tube attached. The tube goes through the skin and is held in place with a surface stitch. Compressing the bag and closing the valve causes pressure to be exerted so that fluid from inside the wounded area is pulled out and into the bag. Twice a day the bag is emptied by opening the valve and squeezing out the contents. The volume of fluid is measured and the amount recorded. (It is helpful to be comfortable with blood, and protein, and fluid of various colors while emptying and measuring.)
When the day came for the final drain to be removed, I began worrying about the pain I anticipated. To remove the drains, the surgeon removed the stitches (a little painful), placed a couple of fingers on my skin either side of the hole and very rapidly pulled the bag and attached drain out of me! Fortunately, I didn't feel it on the inside, but my skin definately had plenty of working pain receptors.
The first two were painful, and they were not nearly as inflamed as the third one which remained in me for several more days. That thing was SORE! So, being a "take charge" kind of person, I decided I should have a local anesthetic before the drain came out. I called my surgeon's office and suggested to his assistant that I should have a local. She said that she had never known him to do it and muttered something about people being afraid of needles and not wanting another hole poked in their skin. Altogether, she seemed somewhat resistant to the idea, which was not exactly an acceptable response. I sid it was easy for her to say it wasn't necessary since it wasn't her who had the drain! Getting nowhere in my reasoning with her, I finally asked her to tell the surgeon what I wanted when he came in. Fortunately, when I arrived he was prepared with a lovely needle and syringe of local anesthetic which made the removal almost painless, the only pain being the minor stinging when the injection began. I engaged him in a little discussion about how much better this was and told him he ought to offer a local to everyone. I wonder if he will.
I think I'll confiscate my administrative assistant's desk ornament which reads, "I'm not bossy, I just know what YOU should be doing."
Friday, December 14, 2012
Surgery and Me
It has been a week and a day since my mastectomy surgery. I'm pleased to say I went back to work on Wednesday and have been working partial days since. Feeling the need to get back to some semblance of normalcy, I was happy to get back to my office. Today was my first day in court and I experienced no difficulty during the 2-hour court session. Still haven't worked a full day, as I am trying hard not to overdo it.
Word that I've been diagnosed with breast cancer and have undergone surgery is gradually spreading among my friends. (Of course, this blog has largely been responsible. It occurs to me that this is an easy way for me to talk about it). I am grateful that so many people have commented, wished me well, and have shared something of their stories of friends and family who have experienced a cancer diagnosis.
My surgeon told me I would might have some lingering numbness in my right arm (where lymph nodes had to be removed). Only time will tell, but the arm is gaining sensitivity. Right now, it is an aggravation and I wouldn't mind the numbness lingering for a while! My perception is that my underarm is being scraped raw, yet there is no redness or visible sign of irritation of the skin. Everything my underarm touches feels a lot like sandpaper, even my bare, soft skin. I suspect there is some nerve damage and am hoping the hyper-sensitivity is reduced with time.
Because the cancer had spread to lymph nodes, I'll require radiation as well as chemo-therapy. To prepare for chemo, I'll have to have a medi-port installed. It will be placed under my collarbone and will have a tube attached which is threaded a few inches into a large vein in the chest. That out-patient surgery is scheduled for the day after Christmas. It should involve a short, 30-minute period of general anesthesia and a rather small incision so I'm hoping for very rapid recovery afterward. As I understand it, this medi-port can remain in place throughout my chemo-therapy and will be used to draw blood when that is necessary, as well as to inject those nasty chemicals that are designed to kill stray cancer cells all through my body. I suppose a small vein would be damaged far more than will the major vein connected to the medi-port. The skin lying over the port is punctured, along with some sort of membrane in the port, to remove and inject what is needed. Cool, huh?
Word that I've been diagnosed with breast cancer and have undergone surgery is gradually spreading among my friends. (Of course, this blog has largely been responsible. It occurs to me that this is an easy way for me to talk about it). I am grateful that so many people have commented, wished me well, and have shared something of their stories of friends and family who have experienced a cancer diagnosis.
My surgeon told me I would might have some lingering numbness in my right arm (where lymph nodes had to be removed). Only time will tell, but the arm is gaining sensitivity. Right now, it is an aggravation and I wouldn't mind the numbness lingering for a while! My perception is that my underarm is being scraped raw, yet there is no redness or visible sign of irritation of the skin. Everything my underarm touches feels a lot like sandpaper, even my bare, soft skin. I suspect there is some nerve damage and am hoping the hyper-sensitivity is reduced with time.
Because the cancer had spread to lymph nodes, I'll require radiation as well as chemo-therapy. To prepare for chemo, I'll have to have a medi-port installed. It will be placed under my collarbone and will have a tube attached which is threaded a few inches into a large vein in the chest. That out-patient surgery is scheduled for the day after Christmas. It should involve a short, 30-minute period of general anesthesia and a rather small incision so I'm hoping for very rapid recovery afterward. As I understand it, this medi-port can remain in place throughout my chemo-therapy and will be used to draw blood when that is necessary, as well as to inject those nasty chemicals that are designed to kill stray cancer cells all through my body. I suppose a small vein would be damaged far more than will the major vein connected to the medi-port. The skin lying over the port is punctured, along with some sort of membrane in the port, to remove and inject what is needed. Cool, huh?
Tuesday, December 11, 2012
The First (Big) Step
After the biopsy, the diagnosis, the MRI and the CT scans came the question, "What next?" For me, the decision was easy. I wanted this cancer out of me! I wanted surgery as soon as it could be arraigned.
However, nothing about breast cancer is simple, including, it seems, scheduling surgery. My oncologist called my surgeon and the surgeon's office gave me a date and time for surgery--Tuesday, 12/04. After giving this date to the most affected people in my life and adjusting my work schedule, I received a call from the surgeon's office. "You've decided to have surgery first, instead of chemo?" asked his assistant. "Yes. You set it for Tuesday, 12/04, right?" I replied. No. Not exactly. She thought the surgery was to be installation of a medi-port (which would be used for the chemo-therapy). I thought the surgery was the double mastectomony I had decided upon. So, she scheduled a new surgery date at a hospital, not an out-patient facility, and a full week after the date I'd first been given. I bitched a bit about a week's delay, but what could I do? I adjusted to the new date, rescheduled things at work, and prepared myself for surgery on 12/12/12. (I secretly liked the date. It is one I would not forget!)
But, everything changed once more (I guess my bitching was effective) and surgery was re-scheduled yet again for Thursday, 12/06. Another round of notifications and re-scheduling and finally the first big step was taken. It will take a while to fully recover, but the surgery is over, I'm off the Lortab, and it feels like progress is being made. Surgery has removed as much of this cancer as possible and more sophisticated weapons will be brought in next. And, as of today, I'm medically cleared to drive!
However, nothing about breast cancer is simple, including, it seems, scheduling surgery. My oncologist called my surgeon and the surgeon's office gave me a date and time for surgery--Tuesday, 12/04. After giving this date to the most affected people in my life and adjusting my work schedule, I received a call from the surgeon's office. "You've decided to have surgery first, instead of chemo?" asked his assistant. "Yes. You set it for Tuesday, 12/04, right?" I replied. No. Not exactly. She thought the surgery was to be installation of a medi-port (which would be used for the chemo-therapy). I thought the surgery was the double mastectomony I had decided upon. So, she scheduled a new surgery date at a hospital, not an out-patient facility, and a full week after the date I'd first been given. I bitched a bit about a week's delay, but what could I do? I adjusted to the new date, rescheduled things at work, and prepared myself for surgery on 12/12/12. (I secretly liked the date. It is one I would not forget!)
But, everything changed once more (I guess my bitching was effective) and surgery was re-scheduled yet again for Thursday, 12/06. Another round of notifications and re-scheduling and finally the first big step was taken. It will take a while to fully recover, but the surgery is over, I'm off the Lortab, and it feels like progress is being made. Surgery has removed as much of this cancer as possible and more sophisticated weapons will be brought in next. And, as of today, I'm medically cleared to drive!
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