I've been kicking around a lot of ideas lately, many concerning my blog, many concerning where I go now regarding life, treatment, the future. I've composed numerous entries in my head; however, inertia and the end of the semester have really done a job on getting anything posted here.
To start things off, for those of you not following along on Facebook, I'm doing much better psychologically. Mostly. I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days. Not something I want to experience again. The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific. Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter. I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running. When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants. So if you see me wearing the same clothes over and over this season, just ignore it.
Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week. When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not. The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy. My onco nurse doesn't refer to it as such. The drug itself is Tykerb. And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of). Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year. Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses. Herceptin is a large molecule. Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one. Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't. Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease. Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.
This has been a difficult decision. Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day. I'll be taking 4.) . Tykerb is expensive, and as I said earlier, I am taking it off-label. Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago. I've seen it quoted at anywhere from $3K-$6K/month. Assuming that I'd be denied, it was easy for me to agree to try. Really, I had not decision to make. My insurance would make it for me. Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month. At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform. And, although I was concerned over my longevity in the face of not taking it, yet it was good. The decision, ultimately, was out of my hands. And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.
Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call. Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month? It was surreal. I paid by credit card, and she told me that the Tykerb would be delivered in two days.
So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.
Side effects. Do I have to? Really? For starters, it can cause fatal liver failure. Sure it can. Like all chemo, it's toxic (by definition, really). It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf). It can also cause lung problems (and to be honest, I've just been to freaked to find out about those). All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk. Yet...
hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace). On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking. So, I'm hopeful. I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).
Tomorrow, then, I'm off to the lab for my blood work in the morning. Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way. I've committed to the summer. All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself. I'll reassess in August and decide if I'm going to stick it out through fall semester. I'll reassess in December if I'm going to finish out the year of treatment.
At least my hair won't fall out.
My second decision lately is that I need to do something about this blog. What, though, I'm not sure. Look for changes in the future.
Showing posts with label herceptin. Show all posts
Showing posts with label herceptin. Show all posts
Saturday, May 7, 2011
Monday, October 25, 2010
Last Herceptin
Today, 15 months to the day of my official diagnosis (that is, the day my pathology came back), I will sit for my last herceptin infusion. Hopefully, my last ever. However, upon contemplation, if I could continue herceptin in an effort to prevent recurrence, I would. If I do have a recurrence, I'll have to have herceptin for the rest of my life, or as long as my heart can tolerate it. It is highly cardio-toxic.
In fact, my last echo-cardiogram indicated a 10% decrease in heart function; however, unlike MUGA scans (which involve the injection of radioactive dyes and freak me out) the "reading" of an echo-cardiogram varies from person to person, so a 10% decrease could be due to interpretation, which is exactly what my onco chalked the decrease up to. The ejection fraction was still within normal range, regardless, and I had run 5 miles the day before....so no one is worried about my heart.
But isn't that a mixed bag: if I have a recurrences, I'll have to have herceptin for the rest of my life, unless it causes enough heart damage that I'll have to stop it. Heart damage can kill...cancer can kill...sucks all the way around, I guess.
Rumor has it there is a herceptin vaccine in stage three trials right now. I'd be first in line, I think, if it were available for me.
Of course, there are "unknown long term effects" with which to be concerned. After all, I think herceptin itself has only been available like I've been using it since 2006 and only since 1998 for metastatic breast cancer...
Anyway, in a few minutes, I'll leave for my last infusion, hopefully forever.
Meanwhile, I'm just about to need to get my hair cut and styled. My wonderful sister-in-law did my first trim a few weeks ago, so that it is all the same length...about 1.5". It's much thicker than it was before. It's much, much curlier. I understand that I have what is known as a "chemo-perm". I'm trying to enjoy it, and I rather hope the curls stay. Some people find they do; others find they don't. Meanwhile, I've decided to keep my hair short. Now, I just need to find a local stylist who can make it do what I want it to do. Oh, and the appropriate "product" to make it conform to my every desire and have a texture that I approve of. Not too much to ask for. Probably impossible.
I've continued my quest for physical fitness. Some might call it an obsession. My one child certainly thinks it takes up too much of my time. Of course, being the whiniest child in the family, I take his complaints with a grain of salt. He'd never be happy. It has been a change for them though...me working days and then taking exercise classes and/or working out in the evenings. At one point, I might have cared more than I do now. Now, whatever. In fact, now, I regret the years I spent sublimating my needs to theirs, and more so, using that as an excuse to avoid dealing with my own issues. Yes, indeed, I think this is a common problem of many women, mothers especially, especially mothers in my "circle" of dedicated breastfeeders and homeschoolers. And now, looking in from the outside, I see many women who have put themselves in the position of being regularly taken advantage of by their families because of this. And I see many women who use their husbands, children, and "busyness" as an excuse for ignoring their physical (and perhaps mental) health. But all of this is material for another entry on another day.
Back to my own quest for fitness. I ran a little over 8 miles yesterday. I didn't do it quite nonstop. Yet, when I did stop, it was to stretch and deal with tight muscles, not to rest. I understand "runners" do this all the time. I'm not racing. I'm completing. I have one more "breast cancer" hurdle to accomplish this year, and that's my reconstruction surgery on November 19th. To psych myself up for that, my plan is to run the equivalent of a half marathon the weekend prior. I can't find a race nearby, and I'll be way too busy dealing with grading, planning for being out of the classroom, and generally getting ready for surgery to travel to a sanctioned event, so my plan is to simply run 13.1 miles on either that Saturday or Sunday on my own. I feel sure I can do it.
That is all well and good. In general, I feel good. I've learned to cope with the constant fatigue, which is still lingering from radiation. Some say it never goes away. My biggest challenge, the one I find most frustrating, the one that is most fear inducing, the worst perhaps permanent side effect of all of this, though, the one thing that I'm NOT doing well dealing with, is chemo-brain. I'll write more about this later, but suffice it to say, it is real, it's not going away or improving, and it has had a HUGE negative impact on my ability to live life and to function at my job. Fortunately, it now has a more professional sounding name and has been recognized by experts. Meanwhile, I am having a hard time coming to grips with, in essence, learning to accept that I'm basically brain damaged and not nearly as smart and capable as I was one year ago.
However, now I must jump in the van, drive to Toledo, and get my last infusion. I shall then celebrate by taking Tynan out to lunch and then, if the weather holds, we are going to go on a fun bike ride in one of the metroparks.
In fact, my last echo-cardiogram indicated a 10% decrease in heart function; however, unlike MUGA scans (which involve the injection of radioactive dyes and freak me out) the "reading" of an echo-cardiogram varies from person to person, so a 10% decrease could be due to interpretation, which is exactly what my onco chalked the decrease up to. The ejection fraction was still within normal range, regardless, and I had run 5 miles the day before....so no one is worried about my heart.
But isn't that a mixed bag: if I have a recurrences, I'll have to have herceptin for the rest of my life, unless it causes enough heart damage that I'll have to stop it. Heart damage can kill...cancer can kill...sucks all the way around, I guess.
Rumor has it there is a herceptin vaccine in stage three trials right now. I'd be first in line, I think, if it were available for me.
Of course, there are "unknown long term effects" with which to be concerned. After all, I think herceptin itself has only been available like I've been using it since 2006 and only since 1998 for metastatic breast cancer...
Anyway, in a few minutes, I'll leave for my last infusion, hopefully forever.
Meanwhile, I'm just about to need to get my hair cut and styled. My wonderful sister-in-law did my first trim a few weeks ago, so that it is all the same length...about 1.5". It's much thicker than it was before. It's much, much curlier. I understand that I have what is known as a "chemo-perm". I'm trying to enjoy it, and I rather hope the curls stay. Some people find they do; others find they don't. Meanwhile, I've decided to keep my hair short. Now, I just need to find a local stylist who can make it do what I want it to do. Oh, and the appropriate "product" to make it conform to my every desire and have a texture that I approve of. Not too much to ask for. Probably impossible.
I've continued my quest for physical fitness. Some might call it an obsession. My one child certainly thinks it takes up too much of my time. Of course, being the whiniest child in the family, I take his complaints with a grain of salt. He'd never be happy. It has been a change for them though...me working days and then taking exercise classes and/or working out in the evenings. At one point, I might have cared more than I do now. Now, whatever. In fact, now, I regret the years I spent sublimating my needs to theirs, and more so, using that as an excuse to avoid dealing with my own issues. Yes, indeed, I think this is a common problem of many women, mothers especially, especially mothers in my "circle" of dedicated breastfeeders and homeschoolers. And now, looking in from the outside, I see many women who have put themselves in the position of being regularly taken advantage of by their families because of this. And I see many women who use their husbands, children, and "busyness" as an excuse for ignoring their physical (and perhaps mental) health. But all of this is material for another entry on another day.
Back to my own quest for fitness. I ran a little over 8 miles yesterday. I didn't do it quite nonstop. Yet, when I did stop, it was to stretch and deal with tight muscles, not to rest. I understand "runners" do this all the time. I'm not racing. I'm completing. I have one more "breast cancer" hurdle to accomplish this year, and that's my reconstruction surgery on November 19th. To psych myself up for that, my plan is to run the equivalent of a half marathon the weekend prior. I can't find a race nearby, and I'll be way too busy dealing with grading, planning for being out of the classroom, and generally getting ready for surgery to travel to a sanctioned event, so my plan is to simply run 13.1 miles on either that Saturday or Sunday on my own. I feel sure I can do it.
That is all well and good. In general, I feel good. I've learned to cope with the constant fatigue, which is still lingering from radiation. Some say it never goes away. My biggest challenge, the one I find most frustrating, the one that is most fear inducing, the worst perhaps permanent side effect of all of this, though, the one thing that I'm NOT doing well dealing with, is chemo-brain. I'll write more about this later, but suffice it to say, it is real, it's not going away or improving, and it has had a HUGE negative impact on my ability to live life and to function at my job. Fortunately, it now has a more professional sounding name and has been recognized by experts. Meanwhile, I am having a hard time coming to grips with, in essence, learning to accept that I'm basically brain damaged and not nearly as smart and capable as I was one year ago.
However, now I must jump in the van, drive to Toledo, and get my last infusion. I shall then celebrate by taking Tynan out to lunch and then, if the weather holds, we are going to go on a fun bike ride in one of the metroparks.
Monday, September 13, 2010
Herceptin Infusion #15
Two infusions left!!! I'm so psyched. October will be the last month of active treatments. It's about time!! I know a lot of people say herceptin is no big deal, and in comparison to active chemo, it really is a walk in the park; however, it's like a walk in a park that has fallen into ruin, where the swings are missing seats, where the grass is strewn with trash and has more bare patches than grassy patches, and where the trash cans are stinky and surrounded by flies.
Yes, it's still a park, but....
So, I'm all burbly and tired and bitchy, all of which is compounded by the lunch I ate, I'm sure, which consisted of a turkey burger with avocado, cheese, and bacon. I so rarely eat meat of any sort any more. If it wasn't the lunch that is making me feel so horrid, then the reactions I'm getting to the herceptin are getting worse each treatment. I'm going with the "it was the lunch" theory for now.
Yet, were it the herceptin, I'd only have to experience this two more times in my life. If it's the lunch, then....damn.
I also had an appointment with Dr. Mo today. I so heart spending time with her. A good doctor will keep you alive as long as possible. A great doctor enjoys living with you, you know?
Of course, she's so busy and I'm no so low priority that I first had to see her practice doctor and this physical therapist she now has on staff. In doing so, I got to share my story at least twice. And they all deemed me doing well, doing wonderfully, fine, excellent, spectacular!
I could have told them that.
The practice doctor was concerned that I'd lost 9 pounds in 9 weeks. However, since I've been working out and eating less, that's actually rather ideal and not a sign of cancer (personally, I think he was reassuring himself, not me when he said that). He was concerned that I'm still fatigued and that my last labs showed that I'm anemic and have micro-blah blah blah hemoglobin yadda yadda yadda. At that point I mentioned that I have thalassimia and that's all normal. Furthermore, I don't feel anemic fatigue...I'm well versed in that feeling having had it all my life. However, not being an MD or someone else who knows what she's talking about, he ordered more labs and had written a prescription for iron...
Gotta love Dr. Mo, she looked pointedly at him when she came in the room and asked, "Didn't Dawn tell you she has thalassimia and her numbers were, therefore, normal for her. She can get labs done in the spring when we see her again. Now, just so you know in the future, you might be tempted to prescribe iron for someone with her numbers, but that is exactly what one doesn't do for people with thalassimia."
Vindication is an awesome feeling.
She then said that she could tell I was doing well, so let's not waste time with that. What changes am I frustrated with now that it should all be over and people probably think it's all over.
God bless her.
She then validated everything I've been feeling and frustrated with. The fatigue, she says is worse for women over 40 and under 70 who go through treatment. She also said it was perfectly normal to feel 10 years older, not just in energy level, but in joints and muscles, and **20** years older mentally.
I mentioned that I'm still having problems with my feet, and she said to use this opportunity to shop for all new shoes and better quality socks. When I told her that was what I'd been doing, she asked me for brand names and stores (she, too, has foot issues and finds many shoes uncomfortable). She told the practice doctor that this was all important information and that he might need to get his female nurses to solicit such information from female patients. And then the information needed to be passed on to his nurses so they could help other women with similar problems.
I then told her that the worst problem was my diminished cognitive capacity and not only does it make me sad, but it's really affecting my mood. She said that cognitive diminishment is now "in the books" and that this area will probably get some of the most rigorous research in the future, now that they've gotten nausea and other chemo side effects controlled. She suggested giving it a full year before I really start to worry, suggested some ways to work with it--such as exercise and sleep, reading and some other forms of stimulation--but also said that the women who notice it the most are the ones who had the most to lose, which is a nice compliment, I suppose, but still really sucks.
Although the practice doctor didn't think that Ambien would help me with this issue, Dr. Mo agreed with me that if I were to be able to go to bed and immediately fall asleep, guaranteeing a little more sleep each night with less chance of awakening, I'd find that I'd function better at work and maybe not be so volatile with my children.
Validation is nice.
So, overall, everything is going well. I don't see Dr. Mo again until MARCH which is sort of scary, but also wonderful.
I have two more herceptin infusions. And my reconstruction surgery three weeks after the last one, and then, for all intents and purposes, it's all over and I can pick up the remaining bits and pieces and be the new me.
Meanwhile, I continue to prepare for running a half marathon in November as my pre-surgery psych-up.
Yes, it's still a park, but....
So, I'm all burbly and tired and bitchy, all of which is compounded by the lunch I ate, I'm sure, which consisted of a turkey burger with avocado, cheese, and bacon. I so rarely eat meat of any sort any more. If it wasn't the lunch that is making me feel so horrid, then the reactions I'm getting to the herceptin are getting worse each treatment. I'm going with the "it was the lunch" theory for now.
Yet, were it the herceptin, I'd only have to experience this two more times in my life. If it's the lunch, then....damn.
I also had an appointment with Dr. Mo today. I so heart spending time with her. A good doctor will keep you alive as long as possible. A great doctor enjoys living with you, you know?
Of course, she's so busy and I'm no so low priority that I first had to see her practice doctor and this physical therapist she now has on staff. In doing so, I got to share my story at least twice. And they all deemed me doing well, doing wonderfully, fine, excellent, spectacular!
I could have told them that.
The practice doctor was concerned that I'd lost 9 pounds in 9 weeks. However, since I've been working out and eating less, that's actually rather ideal and not a sign of cancer (personally, I think he was reassuring himself, not me when he said that). He was concerned that I'm still fatigued and that my last labs showed that I'm anemic and have micro-blah blah blah hemoglobin yadda yadda yadda. At that point I mentioned that I have thalassimia and that's all normal. Furthermore, I don't feel anemic fatigue...I'm well versed in that feeling having had it all my life. However, not being an MD or someone else who knows what she's talking about, he ordered more labs and had written a prescription for iron...
Gotta love Dr. Mo, she looked pointedly at him when she came in the room and asked, "Didn't Dawn tell you she has thalassimia and her numbers were, therefore, normal for her. She can get labs done in the spring when we see her again. Now, just so you know in the future, you might be tempted to prescribe iron for someone with her numbers, but that is exactly what one doesn't do for people with thalassimia."
Vindication is an awesome feeling.
She then said that she could tell I was doing well, so let's not waste time with that. What changes am I frustrated with now that it should all be over and people probably think it's all over.
God bless her.
She then validated everything I've been feeling and frustrated with. The fatigue, she says is worse for women over 40 and under 70 who go through treatment. She also said it was perfectly normal to feel 10 years older, not just in energy level, but in joints and muscles, and **20** years older mentally.
I mentioned that I'm still having problems with my feet, and she said to use this opportunity to shop for all new shoes and better quality socks. When I told her that was what I'd been doing, she asked me for brand names and stores (she, too, has foot issues and finds many shoes uncomfortable). She told the practice doctor that this was all important information and that he might need to get his female nurses to solicit such information from female patients. And then the information needed to be passed on to his nurses so they could help other women with similar problems.
I then told her that the worst problem was my diminished cognitive capacity and not only does it make me sad, but it's really affecting my mood. She said that cognitive diminishment is now "in the books" and that this area will probably get some of the most rigorous research in the future, now that they've gotten nausea and other chemo side effects controlled. She suggested giving it a full year before I really start to worry, suggested some ways to work with it--such as exercise and sleep, reading and some other forms of stimulation--but also said that the women who notice it the most are the ones who had the most to lose, which is a nice compliment, I suppose, but still really sucks.
Although the practice doctor didn't think that Ambien would help me with this issue, Dr. Mo agreed with me that if I were to be able to go to bed and immediately fall asleep, guaranteeing a little more sleep each night with less chance of awakening, I'd find that I'd function better at work and maybe not be so volatile with my children.
Validation is nice.
So, overall, everything is going well. I don't see Dr. Mo again until MARCH which is sort of scary, but also wonderful.
I have two more herceptin infusions. And my reconstruction surgery three weeks after the last one, and then, for all intents and purposes, it's all over and I can pick up the remaining bits and pieces and be the new me.
Meanwhile, I continue to prepare for running a half marathon in November as my pre-surgery psych-up.
Tuesday, August 3, 2010
Herceptin Infusion #13
So, a year ago, I was heavily in the head swirling, crazy ass early days of cancer crap. Those were certainly maybe the worst time of the whole year. I'm guessing, based on email records, that I first met with my onco on July 29th. I know I had my port put in on Aug. 10.
So, on Aug 3, a year ago today, I was in a really weird place...looking at all of what was ahead of me as an unhappy, scary, adventure that I was just going to have to suck up and do.
So, I did 10 total rounds of chemo, six of which included herceptin. Now, I'm wrapping up the chemical part of all this, by finishing out the 17 total herceptin infusions I need. Basically, that's a year, but I took a several month break from herceptin while I got to enjoy the shittiness of OTHER cardio toxic chemo drugs over winter.
Yesterday, I got my 13th herceptin infusion. In general, the only side effects are that I get irrationally bitchy and experience a few days of increased fatigue. The previous infusion caused a couple of days of nausea. But overall, it's not bad. In fact, many women with recurrences get herceptin for the rest of their lives.
By this point, I breeze in, chat up the wonderful infusion nurses, breeze out.
Yesterday, I just felt so good. The nurses always start with a medical history, and I was able to report absolutely NO problems. I've even had less neuropathy. Mostly, the painful part is gone. No more shooting, stabbing pains when I least expect them. Usually. Fatigue, yes. I know given my current level of activity, that is hard to understand.
Sure, I've been kayaking, biking, running. I've been organizing my house. I'm going on a 3 day yoga retreat this weekend. But what people don't see is that I don't do a whole lot more. I'm not cooking dinner for my family. I'm not cleaning house on the days I exercise. And I'm really not exercising much on the days I clean house. Until Aug. 1, I wasn't cleaning house. I'm not organizing people's schedules, nor dealing with any professional responsibilities. I eat. I sleep. I exercise. I go to movies. And, well, that's about all.
I watch tv and hang out on my laptop.
I chillax at Portage Quarry and hang at the City Pool in the evenings.
And that's about all I can do.
The mental fatigue and fuzziness is the worst. But more about all of that later.
All in all, though, I feel great. I love my new hair. While it isn't perfect, I really like my new body. I would keep my rock hard, tissue expander boobs for ever if I could. Really. I really, really like them. Really. I'm happy with them.
Really.
I'm starting to be able to verbalize some pretty significant changes in me.
But best of all, from two infusions ago--six weeks ago--I've lost 7 pounds.
It doesn't feel like it. I don't feel any different. But, according to their records, I've lost 7 pounds.
And that makes me happy.
So, on Aug 3, a year ago today, I was in a really weird place...looking at all of what was ahead of me as an unhappy, scary, adventure that I was just going to have to suck up and do.
So, I did 10 total rounds of chemo, six of which included herceptin. Now, I'm wrapping up the chemical part of all this, by finishing out the 17 total herceptin infusions I need. Basically, that's a year, but I took a several month break from herceptin while I got to enjoy the shittiness of OTHER cardio toxic chemo drugs over winter.
Yesterday, I got my 13th herceptin infusion. In general, the only side effects are that I get irrationally bitchy and experience a few days of increased fatigue. The previous infusion caused a couple of days of nausea. But overall, it's not bad. In fact, many women with recurrences get herceptin for the rest of their lives.
By this point, I breeze in, chat up the wonderful infusion nurses, breeze out.
Yesterday, I just felt so good. The nurses always start with a medical history, and I was able to report absolutely NO problems. I've even had less neuropathy. Mostly, the painful part is gone. No more shooting, stabbing pains when I least expect them. Usually. Fatigue, yes. I know given my current level of activity, that is hard to understand.
Sure, I've been kayaking, biking, running. I've been organizing my house. I'm going on a 3 day yoga retreat this weekend. But what people don't see is that I don't do a whole lot more. I'm not cooking dinner for my family. I'm not cleaning house on the days I exercise. And I'm really not exercising much on the days I clean house. Until Aug. 1, I wasn't cleaning house. I'm not organizing people's schedules, nor dealing with any professional responsibilities. I eat. I sleep. I exercise. I go to movies. And, well, that's about all.
I watch tv and hang out on my laptop.
I chillax at Portage Quarry and hang at the City Pool in the evenings.
And that's about all I can do.
The mental fatigue and fuzziness is the worst. But more about all of that later.
All in all, though, I feel great. I love my new hair. While it isn't perfect, I really like my new body. I would keep my rock hard, tissue expander boobs for ever if I could. Really. I really, really like them. Really. I'm happy with them.
Really.
I'm starting to be able to verbalize some pretty significant changes in me.
But best of all, from two infusions ago--six weeks ago--I've lost 7 pounds.
It doesn't feel like it. I don't feel any different. But, according to their records, I've lost 7 pounds.
And that makes me happy.
Saturday, June 26, 2010
Thank You
I'm quite delayed in writing this. It's at least weeks, if not months over due. The fact is, I'm verklempt.
It's been nearly a year, actually 11 months to the day, since I got my diagnosis of breast cancer. Since then, while life has taken many twists and turns, and while I'd rather just erase the whole of last year--you will never hear me say that I'm thankful for getting cancer--the support you, my friends, both in my local community as well as those of you non-local, has been awesome. I can honestly say that friendships have been deepened and strengthened.
I can't even begin to explain or describe it all. Suffice it to say, people have been wonderful. More wonderful than words can express. In fact, I don't really even know where to start.
For months, people provided us meals, transportation, house cleaning, and other niceties, such as hand crafted soap and special oils for healing skin. Friends have helped us financially and emotionally. Near strangers have sent notes of encouragement. Colleagues have taught classes for me when I've been unable to teach. Friends have made hats for my freakishly large noggin, and provided me with enough scarves to allow me to dance the dance of the seven veils. We've received bread in the mail, gift cards, and funds for me to attend a yoga retreat. Friends from a distance helped with Christmas gifts, and local friends have put miles on their carss and spent oodles of time in parking lots, waiting rooms, and doctors' offices. I'm sure I'm leaving something out. Please don't be offended. Read ahead about my memory...
Like I said, I'm verklempt.
So, I'll simply end with an update of what's taken place, what's happening now, and what the future holds.
The Past:
Six rounds of chemo (herceptin, carboplatin, taxotere) every three weeks from August-the end of November.
Bilateral mastectomy with tissue expanders (stage one of reconstruction) December
Four rounds of chemo (Adriamyacin, cytoxin) every two weeks Jan-March.
Six weeks of radiation, daily, March-May.
11 herceptin infusions, every three weeks, March-? (I have 6 left)
All in all, I made it through all of that relatively (?) unscathed. The doctors all seem to believe I "handled it well".
Not counting the absent hair and faux boobs, I guess I did, all things considered. Several of the drugs are cardio-toxic, including the herceptin, but my most recent echo-cardiogram was fine.
The radiation most likely did some heart and lung damage, but I'm running nearly daily and am in the best shape I've been in in over 20 years. I completed a 5K race today, as a matter of fact.
I've lost 30 or so pounds and managed to keep it off, while most women who undergo breast cancer treatment gain weight.
My hemoglobin is nearly normal, or at least up to nearly double digits, which is an improvement. Having a nearly sufficient amount of O2 in your blood can never be appreciated quite enough.
I have a fair amount of peripheral neuropathy, leaving the front third of each foot nearly numb, having shooting pains in my feet (but that's an improvement over the pains that had been in my legs and ankles for months), and numbness on the tips of my fingers. At least that doesn't seem to slow down my typing, but it does make turning pages a bit challenging.
I've also noticed a fairly significant change in cognitive function, but theoretically, that should lessen over the next year or so.
I get to start the rounds to all the doctors again this month to find out if there has been any permanent damage to other systems: kidneys, pancreas, liver, adrenal functions, etc. Hopefully, I won't have any progressive cardiac or lung damage in the future.
Otherwise, with the exception of some fairly significant fatigue at times, which is supposed to diminish over the next 11 months.....
I feel great.
Really, I do.
I don't have the energy I used to, which coupled with the cognitive changes, means that things I used to take for granted (and still never accomplished very competently) such as meal planning, grocery shopping, and meal preparation are a real challenge. As is keeping up with deadlines and remembering things that need to be remembered....like the fact that I'd signed my youngest child up for the STARS program this summer, yet have never once sent him.....Household chores are sketchily accomplished, at best.
Yet, one advantage is that I DON"T REMEMBER that I"VE FORGOTTEN THINGS.
So, if I forget to fix dinner, oh well, I'll forget that I forgot eventually.
And one good part of fatigue is also apathy. I don't care if the bathroom sink is gnarly. And as soon as I'm away from it, I forget it's gross.
So, in general all is good.
As for the future? I'm scheduled to have the next stage of my reconstruction done the Friday before Thanksgiving.
I've delayed it for several reasons, one important one is psychological. Right now, I feel good, and I want to continue to feel good for awhile. But most importantly is a medical reason....I don't deal with anesthesia so well. Add anesthesia and its potential side effects to my cognitive changes, and no one thought it would be a good thing to expose me to more anesthesia than necessary. If I wait until November to do my reconstruction, the plastic surgeon can remove my port, saving me from having to be anesthetized for that surgery as well. Two for the price of one!
Hopefully, that will be the total end of it all...
My family has held up fairly well. As well as can be expected when faced with a wife and mother's mortality and sickness. It has been a rough year, but I think no one has been permanently harmed.
Nothing will be the same again, but a few of the boys' friends have really come through for them, hanging out, being highly supportive, not being creeped out by a bald, sick mom. They even invited me to coach their indoor soccer team two sessions this winter, and were quite understanding on the nights when I just couldn't do it.
Tynan was quite the sport about going to school, even though he didn't like it much at all. Aidan ended up rather liking school, especially socially. He'll be going back, although BGHS isn't the best fit for him. Tynan will probably be home next year for fifth grade. Nathan will be mostly at the university next year.
Louis has been home a lot, which has been a big help, but it would be a bigger help if he had a job he could go to :) However, as long as he's home, he keeps himself busy and is almost as good as having a wife.
But if anyone knows of a traditional housewife we could use or a job for my husband, any leads would be greatly appreciated.
Anyway, thank you very much, friends and loved ones, for helping us get to this point and still be capable of humor.
We love you all and hope to return the kindnesses in the future.
It's been nearly a year, actually 11 months to the day, since I got my diagnosis of breast cancer. Since then, while life has taken many twists and turns, and while I'd rather just erase the whole of last year--you will never hear me say that I'm thankful for getting cancer--the support you, my friends, both in my local community as well as those of you non-local, has been awesome. I can honestly say that friendships have been deepened and strengthened.
I can't even begin to explain or describe it all. Suffice it to say, people have been wonderful. More wonderful than words can express. In fact, I don't really even know where to start.
For months, people provided us meals, transportation, house cleaning, and other niceties, such as hand crafted soap and special oils for healing skin. Friends have helped us financially and emotionally. Near strangers have sent notes of encouragement. Colleagues have taught classes for me when I've been unable to teach. Friends have made hats for my freakishly large noggin, and provided me with enough scarves to allow me to dance the dance of the seven veils. We've received bread in the mail, gift cards, and funds for me to attend a yoga retreat. Friends from a distance helped with Christmas gifts, and local friends have put miles on their carss and spent oodles of time in parking lots, waiting rooms, and doctors' offices. I'm sure I'm leaving something out. Please don't be offended. Read ahead about my memory...
Like I said, I'm verklempt.
So, I'll simply end with an update of what's taken place, what's happening now, and what the future holds.
The Past:
Six rounds of chemo (herceptin, carboplatin, taxotere) every three weeks from August-the end of November.
Bilateral mastectomy with tissue expanders (stage one of reconstruction) December
Four rounds of chemo (Adriamyacin, cytoxin) every two weeks Jan-March.
Six weeks of radiation, daily, March-May.
11 herceptin infusions, every three weeks, March-? (I have 6 left)
All in all, I made it through all of that relatively (?) unscathed. The doctors all seem to believe I "handled it well".
Not counting the absent hair and faux boobs, I guess I did, all things considered. Several of the drugs are cardio-toxic, including the herceptin, but my most recent echo-cardiogram was fine.
The radiation most likely did some heart and lung damage, but I'm running nearly daily and am in the best shape I've been in in over 20 years. I completed a 5K race today, as a matter of fact.
I've lost 30 or so pounds and managed to keep it off, while most women who undergo breast cancer treatment gain weight.
My hemoglobin is nearly normal, or at least up to nearly double digits, which is an improvement. Having a nearly sufficient amount of O2 in your blood can never be appreciated quite enough.
I have a fair amount of peripheral neuropathy, leaving the front third of each foot nearly numb, having shooting pains in my feet (but that's an improvement over the pains that had been in my legs and ankles for months), and numbness on the tips of my fingers. At least that doesn't seem to slow down my typing, but it does make turning pages a bit challenging.
I've also noticed a fairly significant change in cognitive function, but theoretically, that should lessen over the next year or so.
I get to start the rounds to all the doctors again this month to find out if there has been any permanent damage to other systems: kidneys, pancreas, liver, adrenal functions, etc. Hopefully, I won't have any progressive cardiac or lung damage in the future.
Otherwise, with the exception of some fairly significant fatigue at times, which is supposed to diminish over the next 11 months.....
I feel great.
Really, I do.
I don't have the energy I used to, which coupled with the cognitive changes, means that things I used to take for granted (and still never accomplished very competently) such as meal planning, grocery shopping, and meal preparation are a real challenge. As is keeping up with deadlines and remembering things that need to be remembered....like the fact that I'd signed my youngest child up for the STARS program this summer, yet have never once sent him.....Household chores are sketchily accomplished, at best.
Yet, one advantage is that I DON"T REMEMBER that I"VE FORGOTTEN THINGS.
So, if I forget to fix dinner, oh well, I'll forget that I forgot eventually.
And one good part of fatigue is also apathy. I don't care if the bathroom sink is gnarly. And as soon as I'm away from it, I forget it's gross.
So, in general all is good.
As for the future? I'm scheduled to have the next stage of my reconstruction done the Friday before Thanksgiving.
I've delayed it for several reasons, one important one is psychological. Right now, I feel good, and I want to continue to feel good for awhile. But most importantly is a medical reason....I don't deal with anesthesia so well. Add anesthesia and its potential side effects to my cognitive changes, and no one thought it would be a good thing to expose me to more anesthesia than necessary. If I wait until November to do my reconstruction, the plastic surgeon can remove my port, saving me from having to be anesthetized for that surgery as well. Two for the price of one!
Hopefully, that will be the total end of it all...
My family has held up fairly well. As well as can be expected when faced with a wife and mother's mortality and sickness. It has been a rough year, but I think no one has been permanently harmed.
Nothing will be the same again, but a few of the boys' friends have really come through for them, hanging out, being highly supportive, not being creeped out by a bald, sick mom. They even invited me to coach their indoor soccer team two sessions this winter, and were quite understanding on the nights when I just couldn't do it.
Tynan was quite the sport about going to school, even though he didn't like it much at all. Aidan ended up rather liking school, especially socially. He'll be going back, although BGHS isn't the best fit for him. Tynan will probably be home next year for fifth grade. Nathan will be mostly at the university next year.
Louis has been home a lot, which has been a big help, but it would be a bigger help if he had a job he could go to :) However, as long as he's home, he keeps himself busy and is almost as good as having a wife.
But if anyone knows of a traditional housewife we could use or a job for my husband, any leads would be greatly appreciated.
Anyway, thank you very much, friends and loved ones, for helping us get to this point and still be capable of humor.
We love you all and hope to return the kindnesses in the future.
The Pickle Chase
I completed my first 5K today.
Notice I didn't say "I ran my first 5K today."
The day didn't start out that great. Somehow, I incorporated my first alarm into one of my dreams. So, I over slept. I barely got there in time to register and get to the start, so I didn't get a chance to warm up. Then I had ipod issues, which slowed me down. Plus, I'd forgotten to reset my play list....
I completed it. That's what I set out to do.
Initially, when I signed up, I was running for about 3 miles nonstop. Then the AP Reading and an herceptin infusion intervened. Herceptin just seems to trash my stamina.
So, I adjusted my goal to finishing in under 45 minutes, with walking included.
Then I adjusted my goal to finishing without crawling....heh....no, seriously.
But, overall, it's over. I did it. And I signed up for another one next week.
Notice I didn't say "I ran my first 5K today."
The day didn't start out that great. Somehow, I incorporated my first alarm into one of my dreams. So, I over slept. I barely got there in time to register and get to the start, so I didn't get a chance to warm up. Then I had ipod issues, which slowed me down. Plus, I'd forgotten to reset my play list....
I completed it. That's what I set out to do.
Initially, when I signed up, I was running for about 3 miles nonstop. Then the AP Reading and an herceptin infusion intervened. Herceptin just seems to trash my stamina.
So, I adjusted my goal to finishing in under 45 minutes, with walking included.
Then I adjusted my goal to finishing without crawling....heh....no, seriously.
But, overall, it's over. I did it. And I signed up for another one next week.
Monday, June 21, 2010
Long time love
I had an infusion today. With herceptin, infusions are fast and easy. The actual infusion takes maybe 45 minutes, max. Of course, that doesn't include the waiting. All told, I plan on 1.5 hours per infusion, which compared to chemo is a breeze. Plus, herceptin, while it tends to make me bitchy, otherwise doesn't seem to have any negative immediate side effects (it is cardio toxic so it could have some pretty crappy long term side effects, but in general, I don't feel bad when I get these infusions).
Unlike the chemo patients, herceptin only patients have it easy, plus most of us have hair.
In a sense, I guess you could say we are the "graduates" who are coming back to school to visit.
Today, when I was waiting to go into the infusion suite, I was sitting next to a quite elderly African-American gentleman. He was still, solemn. Very still. As I was waiting, one of the infusion nurses came out and told him he could come back and bring his wife her crocheting and see how she was doing. Away he went.
When I finally got back into the suite, I ended up striking up a conversation with her. She struck me as quite a bit younger than her husband, but what do I know? Anyway, it became clear that today was her first chemo infusion, and it was clear that she and her husband really love each other.
Later he came back into the suite, carrying her large purse. Holding it comfortably, yet as if it were a foreign object. He just wanted to check on her. He wanted to know how, exactly the infusion machine worked. It's sort of magic. It's like an IV drip with a regulator on it, or something like that. He inquired about her crochet project...a kelly green and white afghan with 3-D flowers on it, for her grandson.
Overall, he exuded concern.
He was wearing pleated slacks that bagged on his slight, stooped frame and a long sleeved dress shirt, buttoned up to the top button. She asked him to bend over, and my first thought was that she was going to give him a peck on his cheek. Instead, she straightened the back of his collar.
After he left, she and I struck up a conversation and she told me that he had been her pastor for 19 years. Then his wife died and five years later, they were married. They are approaching their 13th anniversary.
Knowing he'd already lost one wife helps explain his concern, solemnity, and quietude.
I've heard horror stories of husbands not "getting it" when it comes to their wives' chemo treatment, men who think women should be up to sex on on chemo weeks, men who think their wives should be making them dinner, men who don't understand the deep fatigue that comes with chemo. Honestly, I've met several women I've been quite concerned about.
But this woman today, I feel she will be well taken care of in the weeks and months to come.
That man obviously adored her. And she him.
Unlike the chemo patients, herceptin only patients have it easy, plus most of us have hair.
In a sense, I guess you could say we are the "graduates" who are coming back to school to visit.
Today, when I was waiting to go into the infusion suite, I was sitting next to a quite elderly African-American gentleman. He was still, solemn. Very still. As I was waiting, one of the infusion nurses came out and told him he could come back and bring his wife her crocheting and see how she was doing. Away he went.
When I finally got back into the suite, I ended up striking up a conversation with her. She struck me as quite a bit younger than her husband, but what do I know? Anyway, it became clear that today was her first chemo infusion, and it was clear that she and her husband really love each other.
Later he came back into the suite, carrying her large purse. Holding it comfortably, yet as if it were a foreign object. He just wanted to check on her. He wanted to know how, exactly the infusion machine worked. It's sort of magic. It's like an IV drip with a regulator on it, or something like that. He inquired about her crochet project...a kelly green and white afghan with 3-D flowers on it, for her grandson.
Overall, he exuded concern.
He was wearing pleated slacks that bagged on his slight, stooped frame and a long sleeved dress shirt, buttoned up to the top button. She asked him to bend over, and my first thought was that she was going to give him a peck on his cheek. Instead, she straightened the back of his collar.
After he left, she and I struck up a conversation and she told me that he had been her pastor for 19 years. Then his wife died and five years later, they were married. They are approaching their 13th anniversary.
Knowing he'd already lost one wife helps explain his concern, solemnity, and quietude.
I've heard horror stories of husbands not "getting it" when it comes to their wives' chemo treatment, men who think women should be up to sex on on chemo weeks, men who think their wives should be making them dinner, men who don't understand the deep fatigue that comes with chemo. Honestly, I've met several women I've been quite concerned about.
But this woman today, I feel she will be well taken care of in the weeks and months to come.
That man obviously adored her. And she him.
Sunday, May 23, 2010
Go toward the light...
A few weeks ago, I said that I saw a light at the end of the tunnel. I was really hoping that that light wasn't a train or something like that.
To recap, I finished radiation the second week of May, and made it through alright. I developed some annoying burns the week after, but a well placed call (and being cranky) to the radiation nurses got me a prescription for some Silvadene creme which helped immensely. At this point, I have some peeling skin under my arm and some scabbed over blisters under my breast, none of which really bother me, so I'm guessing I'm calling the immediate physical side effects finished.
I've hit the peak of my fatigue from radiation, and sometime over the next few months it should start to improve. This explains why I'm so delayed in updating my blog. I can apparently string together 420 or fewer characters to update facebook, but much more than that has seemed overwhelming.
And for that I apologize.
I saw Dr. Mo, my onco, on Thursday, exactly 10 months to the day from being told that I most likely had fairly advanced breast cancer. That was the 20th of July, and the final testing results were told to me on the 25 of July. On May 20, the birthday of my 10 yr old son and the 16th birthday of my stillborn daughter, Dr. Mo pronounced me "cured."
Wow.
I guess that light was really the sun and not a train headlight.
While no one can be sure what is going on on the molecular or cellular level, as far as Dr. Mo is concerned, I am officially cancer free. I've been chemo'd (x2), radiated, sliced and diced, and, in theory at least, those rogue, rapidly multiplying cells are all gone.
I still have to do 8 more rounds of herceptin to make sure that my cells don't decide to rapidly multiply. But that's not that big of a deal compared to chemo. And I have at least one reconstruction surgery ahead at some point. And then there are all the long term side effects which may or may not be permanent: neuropathy, cardiac toxicity, reduced heart function, possible lung damage, damage to other physiological systems, psychological and neurological changes.....
But the cancer is cured and for that I'm quite relieved.
To recap, I finished radiation the second week of May, and made it through alright. I developed some annoying burns the week after, but a well placed call (and being cranky) to the radiation nurses got me a prescription for some Silvadene creme which helped immensely. At this point, I have some peeling skin under my arm and some scabbed over blisters under my breast, none of which really bother me, so I'm guessing I'm calling the immediate physical side effects finished.
I've hit the peak of my fatigue from radiation, and sometime over the next few months it should start to improve. This explains why I'm so delayed in updating my blog. I can apparently string together 420 or fewer characters to update facebook, but much more than that has seemed overwhelming.
And for that I apologize.
I saw Dr. Mo, my onco, on Thursday, exactly 10 months to the day from being told that I most likely had fairly advanced breast cancer. That was the 20th of July, and the final testing results were told to me on the 25 of July. On May 20, the birthday of my 10 yr old son and the 16th birthday of my stillborn daughter, Dr. Mo pronounced me "cured."
Wow.
I guess that light was really the sun and not a train headlight.
While no one can be sure what is going on on the molecular or cellular level, as far as Dr. Mo is concerned, I am officially cancer free. I've been chemo'd (x2), radiated, sliced and diced, and, in theory at least, those rogue, rapidly multiplying cells are all gone.
I still have to do 8 more rounds of herceptin to make sure that my cells don't decide to rapidly multiply. But that's not that big of a deal compared to chemo. And I have at least one reconstruction surgery ahead at some point. And then there are all the long term side effects which may or may not be permanent: neuropathy, cardiac toxicity, reduced heart function, possible lung damage, damage to other physiological systems, psychological and neurological changes.....
But the cancer is cured and for that I'm quite relieved.
Sunday, May 2, 2010
I really think that is a real light at the end of the tunnel...
Yes indeedy. I got some good news on Friday. As I was leaving radiation, one of the technicians commented that this coming Thursday was my last day. I was thinking it was Friday. So I made her double check. Yes, indeedy, I only have 4 days of radiation left! Thursday is my last radiation.
That is a huge milestone. Thursday will be the last active day of cancer treatment.
There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."
So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.
The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.
This simply is not an option. I will get my life back. I will feel better than I did before.
However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.
Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.
As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.
Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.
That is a huge milestone. Thursday will be the last active day of cancer treatment.
There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."
So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.
The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.
This simply is not an option. I will get my life back. I will feel better than I did before.
However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.
Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.
As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.
Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.
Friday, March 26, 2010
The first of 11...
...Herceptin infusions, that is.
I guess it could be called "chemo lite" even though technically, it's not chemo. For the next 30 weeks, I'll go to the infusion center to get a herceptin only infusion. The side effects, compared to chemo, are minimal.
Herceptin alone is responsible for decreasing breast cancer recurrence for people with my type of tumor by 40-50%. However, this does come with costs: an increased risk of heart disease (cardiomyopathy and congestive heart failure, both of which can lead to death) and an estimated financial cost of $100,000/yr.
As I said before, compared to chemo, the side effects (other than heart issues) are minor: fever, chills, muscle aches, nausea. These side effects are said to decrease with future infusions. I had six herceptin infusions with my first round of chemo (last fall, before my surgery). At that time, I also received carboplatin and taxotere. I experienced quite severe leg and joint pain, especially the last half of the treatments, which lasted until January (I finished treatments in November). That pain was attributed to the taxotere. However, now I wonder about that because tonight, for the first time since it went away, I experienced that same pain, on a much lower scale, in my knees while I was driving (before, it was severe enough to cause me to automatically take pain relief if I were driving anywhere out of town), I can "feel" my knees sitting in this recliner, and my ankles were aching at dinner. Granted, this is all at a much lower level, but it is otherwise the exact same pain, in the exact same places that I experienced before.
Now I wonder, will it get worse over time? Is this a fluke? Is it all in my head? Or, will the pain build over time, and if so, how intense can it get over 30 weeks of treatment? Was it compounded by the taxotere?
Will I actually become an old lady before I stop feeling like an old lady?
So, that's what I did today, and, hopefully, that's what I'll do every third Friday for the next 30 weeks. So far, I feel fine, other than those odd, minor aches. You can read about how herceptin works here.
Meanwhile, the detox diet has been going well. I just may have to get used to cooking separately for myself because after 1.5 weeks of no sugar, no saturated fats, no grains, no dairy and eating mostly various leafy greens, fish, chicken, and berries, I really don't find the thought of other foods very enticing. For some reason, tonight, I had an intense craving for Bob Evan's biscuits, but even that intensity was much less than just a few days ago when I could have killed for a mouthful of the fried rice I made my family for dinner.
Now, if I could figure out how to replicate the Garden Tomato Soup that is served at Naslada, I'd be one happy camper.
I guess it could be called "chemo lite" even though technically, it's not chemo. For the next 30 weeks, I'll go to the infusion center to get a herceptin only infusion. The side effects, compared to chemo, are minimal.
Herceptin alone is responsible for decreasing breast cancer recurrence for people with my type of tumor by 40-50%. However, this does come with costs: an increased risk of heart disease (cardiomyopathy and congestive heart failure, both of which can lead to death) and an estimated financial cost of $100,000/yr.
As I said before, compared to chemo, the side effects (other than heart issues) are minor: fever, chills, muscle aches, nausea. These side effects are said to decrease with future infusions. I had six herceptin infusions with my first round of chemo (last fall, before my surgery). At that time, I also received carboplatin and taxotere. I experienced quite severe leg and joint pain, especially the last half of the treatments, which lasted until January (I finished treatments in November). That pain was attributed to the taxotere. However, now I wonder about that because tonight, for the first time since it went away, I experienced that same pain, on a much lower scale, in my knees while I was driving (before, it was severe enough to cause me to automatically take pain relief if I were driving anywhere out of town), I can "feel" my knees sitting in this recliner, and my ankles were aching at dinner. Granted, this is all at a much lower level, but it is otherwise the exact same pain, in the exact same places that I experienced before.
Now I wonder, will it get worse over time? Is this a fluke? Is it all in my head? Or, will the pain build over time, and if so, how intense can it get over 30 weeks of treatment? Was it compounded by the taxotere?
Will I actually become an old lady before I stop feeling like an old lady?
So, that's what I did today, and, hopefully, that's what I'll do every third Friday for the next 30 weeks. So far, I feel fine, other than those odd, minor aches. You can read about how herceptin works here.
Meanwhile, the detox diet has been going well. I just may have to get used to cooking separately for myself because after 1.5 weeks of no sugar, no saturated fats, no grains, no dairy and eating mostly various leafy greens, fish, chicken, and berries, I really don't find the thought of other foods very enticing. For some reason, tonight, I had an intense craving for Bob Evan's biscuits, but even that intensity was much less than just a few days ago when I could have killed for a mouthful of the fried rice I made my family for dinner.
Now, if I could figure out how to replicate the Garden Tomato Soup that is served at Naslada, I'd be one happy camper.
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