Friday, August 08, 2008
The Five-Year Mark
Five years ago today I had a biopsy. I was very surprised that my biopsy would involve taking out a golf-ball sized chunk since I thought biopsies consisted of taking a core sample with a needle. Both are true, but I didn't have a solid mass so they needed to do surgery. My biopsy was a guided wire procedure (which I will never submit to again) and I fainted while sitting at the mammogram machine. After the biopsy and after puking from the anesthesia, they let me go home.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
Labels: ascites, biopsy, chemo, DCIS, Dr. Barbi, hip, hospital, liver, mammogram, mom, spleen, surgery
Thursday, March 20, 2008
Hi-Ho, Hi-Ho, It's Off to Work I G---what? What NOW?
I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Labels: acne, Adriamycin, CT scan, Dr. Hayes, Dr. Sachs, Gemzar, Lita, liver, lyrica, pamelor, shingles, spleen, ultram, Xeloda
Thursday, January 31, 2008
Hearts
It's that time of year: Valentine's day is fast approaching, when people's thoughts turn to matters of love and "why do greeting cards have such horrible rhymes?" In case you don't want to make do with the standard chalky valentine heart candies and want to send your sweetie a special custom message, you might try the Candy Heart generator instead.
I've also been thinking about my own heart. I am currently taking the drug Adriamycin, also known as "the Red Devil." It is bright kool-aid red and looks very alarming. Adriamycin also has a terrible reputation for causing nausea and all manner of horrible chemo side-effects. I can't say that I've had many problems. I do need to take colace, but it was really the anti-emetics that caused the worst of my symptoms when I began my new regimen.
The Red Devil seems to agree with me.
Here's the catch: Adriamycin is cardiotoxic. Whether given in large doses up front or given in small doses over time, the more Adriamycin you've had, the greater your risk of experiencing permanent heart damage. There are drugs one can take to try to delay the onset of heart damage, but when should they start giving it? There are guidelines, but how close can one cut it? I will probably get to add heart function tests to my usual array of scans. The Red Devil is being sweet now, but he'll eventually break my heart if I don't break up with him first.
No news on the liver and spleen, aside from "ayep, they're big." I'm not keen on doing another liver biopsy, but if I start to worry more about this, I might ask. My first question will be, "Can I be completely and totally unconscious when they stab me in the chest?" I really didn't like the last biopsy.
I've also been thinking about my own heart. I am currently taking the drug Adriamycin, also known as "the Red Devil." It is bright kool-aid red and looks very alarming. Adriamycin also has a terrible reputation for causing nausea and all manner of horrible chemo side-effects. I can't say that I've had many problems. I do need to take colace, but it was really the anti-emetics that caused the worst of my symptoms when I began my new regimen.
The Red Devil seems to agree with me.
Here's the catch: Adriamycin is cardiotoxic. Whether given in large doses up front or given in small doses over time, the more Adriamycin you've had, the greater your risk of experiencing permanent heart damage. There are drugs one can take to try to delay the onset of heart damage, but when should they start giving it? There are guidelines, but how close can one cut it? I will probably get to add heart function tests to my usual array of scans. The Red Devil is being sweet now, but he'll eventually break my heart if I don't break up with him first.
No news on the liver and spleen, aside from "ayep, they're big." I'm not keen on doing another liver biopsy, but if I start to worry more about this, I might ask. My first question will be, "Can I be completely and totally unconscious when they stab me in the chest?" I really didn't like the last biopsy.
Labels: Adriamycin, biopsy, liver, spleen
Tuesday, January 08, 2008
Reports of my Demise, Blah Blah Blah
Ok, so I was wrong about the doom and gloom and my chemo seems to be doing what it's supposed to. My tumor markers are holding steady. My scans seem to indicate that my bones are mostly stable (the bone scan shows possible increased "uptake" but the scan itself doesn't show the disease, it shows the disease being attacked--they call this a "flare effect" and is not cause for panic) and the tumors in my liver are reduced both in size and number (one went from 7cm to 4.5cm). I have some tiny spots in my lungs that don't appear to be doing anything, and there may or may not be some pleural thickening--the CT slices do not necessarily exactly line up from scan to scan, which is possibly why sometimes the couple of lung spots show up and sometimes they don't.
Huh?
Also, my spleen is about three times bigger than it should be, which would not be inconsistent with a liver that's having a tough time. No wonder I feel bloaty. I asked Dr. Hayes, "How big should my spleen BE?" He held up his fist to demonstrate. My spleen is currently 14cm, so I'm walking around with the equivalent of having eaten two large apples at all times in my belly, not to mention the extra mass in my liver. They are testing to rule out hepatitis. If it's not that, I don't know what else they can do. Maybe there's a crucial blockage somewhere. They might refer me to a liver specialist.
Brian and I went to a lecture last night about treating cancer that has metastasized to the liver, and I left feeling very bummed because I have too much cancer for any of the treatments to be considered viable. What else is a liver specialist going to be able to do for me?
Finally, the morning ickiness is probably due to GERD and Lita says I can increase my prilosec and/or keep soda crackers to pop in the morning if I'm feeling not quite right.
The Mini-Doom
The puzzling thing is why, given the reduction in size and number of my liver blobs, are my liver function tests not improved? The analysis states that my liver is irregular in shape, possibly due to carrying around multiple blobs of unholy cell mutantage, or it could be consistent with cirrhosis.Huh?
Also, my spleen is about three times bigger than it should be, which would not be inconsistent with a liver that's having a tough time. No wonder I feel bloaty. I asked Dr. Hayes, "How big should my spleen BE?" He held up his fist to demonstrate. My spleen is currently 14cm, so I'm walking around with the equivalent of having eaten two large apples at all times in my belly, not to mention the extra mass in my liver. They are testing to rule out hepatitis. If it's not that, I don't know what else they can do. Maybe there's a crucial blockage somewhere. They might refer me to a liver specialist.
Brian and I went to a lecture last night about treating cancer that has metastasized to the liver, and I left feeling very bummed because I have too much cancer for any of the treatments to be considered viable. What else is a liver specialist going to be able to do for me?
The Annoyance
Also, no news on the back pain. I am to try taking ibuprofen and to avoid hopping on the trapeze.Finally, the morning ickiness is probably due to GERD and Lita says I can increase my prilosec and/or keep soda crackers to pop in the morning if I'm feeling not quite right.
Labels: bone scan, Brian, CT scan, Dr. Hayes, Lita, liver, lungs, spleen
