Last week I met a couple of women who recently completed their cancer treatment, and they said that one of the hardest things to adjust to was the expectation by their family, their friends, and even themselves, that they could just pick themselves up and take on all of their responsibilities. Treatment is over, so put the cancer on a shelf and move on. What they are finding, though, is that even after treatment is over, there are lingering side effects, exhaustion in particular, that sometimes interfere with them doing what is expected.
I sort of feel that way now. The mastectomy was 4 weeks ago today. I am back at work and taking care of the girls and the house and my husband, and just waiting for the test results. Life moves on while I wait, so I have to put the cancer aside. For me, this is a better way of dealing with the unknown than sitting around trying to predict the results.
However, I learned last night that, even with my "put it on the shelf" approach, there are consequences. Surgery sites get very sore and exhaustion sets in if we are not paying proper attention. So, while my approach alows me to not dwell on the cancer, I'm also not always listening to my body (here is where my family and friends are saying "DUH!").
So, today, I am slowing down (a little), doing my 30 minutes of weight-bearing exercise, stretching, drinking my Kombucha and backing off a bit. I'm learning, albeit slowly and reluctantly, that when I try to put the cancer on a shelf too early, it can fall off and land with a big thud, right on my chest!
Wednesday, October 24, 2007
Wednesday, October 17, 2007
Tests and Insurance
I've mentioned already that my surgeon and oncologist both recommended the Oncotype DX test to determine what help chemo would offer in my cancer treatment. Last week the oncologist submitted the paperwork to Genomic Health, the company that does the test. He mentioned that we are fortunate here because the closest testing facility is only about 40 miles away.
Yesterday, I received a call from a Patient Advocate at Genomic Health. She told me that Genomic does not have a contract with my insurance company, Blue Cross of California. I found this to be shocking because I knew about the Genomic facility here and because my husband's company had provided me with a printout of the Blue Cross of California policy statement on the Oncotype DX test. I explained this to the Advocate, and read to her the policy outline, including the section where Blue Cross sets out 10 criteria for coverage. She just told me to keep the policy, because we might need it later.
Because there is no contract with my insurance carrier, Genomics will submit the bills to Blue Cross, but the advocate warned that they may pay nothing. The test costs $3,500. Now, Genomics does have a program to help families pay for the test. If you meet income levels, which allow for deductions for mortgage, car payments, education and medical expenses, you will pay only $50 for the test. We don't meet the criteria. After a short talk with my husband, we decided to do the test anyway. It is too important to us.
The cost is huge for us, but that wasn't what really bothered me. My husband I both work, and we don't have a lot of debt, so we are lucky. We will figure it out.
What really bothered me is the insurance company not covering the test. Here's the thing. If the test shows I don't need chemo, which the insurance does cover, they save thousands and thousands of dollars. If it shows I do need chemo, then the expense means that the chemo is a necessary treatment and will reduce the risk that I'll have a recurrence which would cost more down the road. If my husband I decided we could not take the financial hit of the test on top of all of the other surgery, pathology and hospital co-pays and deductibles we have to pay this year, then I may likely have decided that not doing chemo was too high a risk, and the insurance would have covered the chemo treatments.
Again, I know I am lucky. There are so many people facing devastating health bills because they have no insurance or are under-insured. They don't have the option of making the choices I am making. I don't want to let this go. There are tests and treatments that are being developed to target cancer treatments in more effective ways than the traditional cut, burn and radiate methods. Companies like Genomics are doing a wonderful service by helping families who can't afford to choose a test in spite of their insurance company and I hope other companies are doing the same. As for Blue Cross of California, I'll be getting ready to fight them if I have to.
Yesterday, I received a call from a Patient Advocate at Genomic Health. She told me that Genomic does not have a contract with my insurance company, Blue Cross of California. I found this to be shocking because I knew about the Genomic facility here and because my husband's company had provided me with a printout of the Blue Cross of California policy statement on the Oncotype DX test. I explained this to the Advocate, and read to her the policy outline, including the section where Blue Cross sets out 10 criteria for coverage. She just told me to keep the policy, because we might need it later.
Because there is no contract with my insurance carrier, Genomics will submit the bills to Blue Cross, but the advocate warned that they may pay nothing. The test costs $3,500. Now, Genomics does have a program to help families pay for the test. If you meet income levels, which allow for deductions for mortgage, car payments, education and medical expenses, you will pay only $50 for the test. We don't meet the criteria. After a short talk with my husband, we decided to do the test anyway. It is too important to us.
The cost is huge for us, but that wasn't what really bothered me. My husband I both work, and we don't have a lot of debt, so we are lucky. We will figure it out.
What really bothered me is the insurance company not covering the test. Here's the thing. If the test shows I don't need chemo, which the insurance does cover, they save thousands and thousands of dollars. If it shows I do need chemo, then the expense means that the chemo is a necessary treatment and will reduce the risk that I'll have a recurrence which would cost more down the road. If my husband I decided we could not take the financial hit of the test on top of all of the other surgery, pathology and hospital co-pays and deductibles we have to pay this year, then I may likely have decided that not doing chemo was too high a risk, and the insurance would have covered the chemo treatments.
Again, I know I am lucky. There are so many people facing devastating health bills because they have no insurance or are under-insured. They don't have the option of making the choices I am making. I don't want to let this go. There are tests and treatments that are being developed to target cancer treatments in more effective ways than the traditional cut, burn and radiate methods. Companies like Genomics are doing a wonderful service by helping families who can't afford to choose a test in spite of their insurance company and I hope other companies are doing the same. As for Blue Cross of California, I'll be getting ready to fight them if I have to.
Tuesday, October 16, 2007
Finding Support
Last evening I attended my first Breast Cancer Support Group. I was not enthusiastic about going, and I'm not certain yet how I feel about it, but I do see the value of this type of interaction.
There are support groups for all sorts of conditions, circumstances and places in which people find themselves. When my first child was born, I joined Las Madres, which is really a support group for new parents. Through that group, I met amazing women and made wonderful, lifelong friends; friends who are supporting me today as I deal with cancer.
In this case, the support group is very specifically focused on this one type of cancer. The group dealt with where everyone is in their course of treatment, and more importantly, provided a safe and caring atmosphere in which to express fears, hopes and challenges that dealing with breast cancer brings to life.
I learned last night that talking about breast cancer is very different when you are talking to women who also have breast cancer. Friends, family and colleagues are wonderful sources of support, but there seems to be a different quality and depth to a conversation among a group who all have the same cancer. There is a level of vulnerability, and of humor, that gives texture and body to the words and emotions that goes far beyond sympathy or even empathy; it is a knowing.
I'm not sure if I'm quite ready to share in this way on a regular basis. But it is helpful to know that the option is there.
There are support groups for all sorts of conditions, circumstances and places in which people find themselves. When my first child was born, I joined Las Madres, which is really a support group for new parents. Through that group, I met amazing women and made wonderful, lifelong friends; friends who are supporting me today as I deal with cancer.
In this case, the support group is very specifically focused on this one type of cancer. The group dealt with where everyone is in their course of treatment, and more importantly, provided a safe and caring atmosphere in which to express fears, hopes and challenges that dealing with breast cancer brings to life.
I learned last night that talking about breast cancer is very different when you are talking to women who also have breast cancer. Friends, family and colleagues are wonderful sources of support, but there seems to be a different quality and depth to a conversation among a group who all have the same cancer. There is a level of vulnerability, and of humor, that gives texture and body to the words and emotions that goes far beyond sympathy or even empathy; it is a knowing.
I'm not sure if I'm quite ready to share in this way on a regular basis. But it is helpful to know that the option is there.
Saturday, October 13, 2007
Percentages
I'm discovering that dealing with cancer long-term is all about percentages. Once the initial tumor or tumors are removed, it becomes a game of statistics, i.e. What is the chance that the cancer will come back to the original location or appear somewhere else in the body?
In my case, by opting for the double mastectomy, I've pretty well eliminated the risk of the cancer coming back in the same location. Now, I have to decide what my comfort level is with the risk that the cancer will show up someplace else. That risk factor changes depending on what adjuvent treatment I choose.
I met with the new oncologist yesterday. After talking with him and looking at the basic risk factors: tumor size, tumor grade, hormone receptor status and node status, my husband and I agreed with him that more data would be helpful. Basically, using those 4 factors, if I go with Tamoxifen alone, my risk of recurrence is 10%. If I go with Tamoxifen and chemo, my risk of recurrence is 5%. In the world of cancer, these are supposed to be very good odds. The oncologist said I am a pretty straightforward case, but he thinks having more data would be helpful. So, we are doing the Oncotype DX test. This test looks not at the 4 factors, but at 21 genes in the tumor to assess recurrence risk and it seems to be the best predictor test for my particular type of cancer. So, in 10 days, we'll have more data to help us decide what to do next.
Dealing with cancer in this way is odd at best, and more disconcerting than I'd like. I do understand that my risk of having the cancer come back is pretty low, but the thing I can't seem to shake is that my risk of ever getting breast cancer in the first place was even lower. And yet, here I am.
In my case, by opting for the double mastectomy, I've pretty well eliminated the risk of the cancer coming back in the same location. Now, I have to decide what my comfort level is with the risk that the cancer will show up someplace else. That risk factor changes depending on what adjuvent treatment I choose.
I met with the new oncologist yesterday. After talking with him and looking at the basic risk factors: tumor size, tumor grade, hormone receptor status and node status, my husband and I agreed with him that more data would be helpful. Basically, using those 4 factors, if I go with Tamoxifen alone, my risk of recurrence is 10%. If I go with Tamoxifen and chemo, my risk of recurrence is 5%. In the world of cancer, these are supposed to be very good odds. The oncologist said I am a pretty straightforward case, but he thinks having more data would be helpful. So, we are doing the Oncotype DX test. This test looks not at the 4 factors, but at 21 genes in the tumor to assess recurrence risk and it seems to be the best predictor test for my particular type of cancer. So, in 10 days, we'll have more data to help us decide what to do next.
Dealing with cancer in this way is odd at best, and more disconcerting than I'd like. I do understand that my risk of having the cancer come back is pretty low, but the thing I can't seem to shake is that my risk of ever getting breast cancer in the first place was even lower. And yet, here I am.
Saturday, October 6, 2007
It's very stark
My surgeon is a wonderful, caring woman. She has been very forthright with me about my cancer and the treatment options. When I decided to fore go the bi-yearly mammograms and certain biopsies of my left breast to do the double-mastectomy, she called me to her office to be sure I was certain about my decision and to talk about what it would look like.
Yesterday, after she pulled the last drain (ouch!), she spoke to me again about the realities of the double. She said, "It's not pretty, and with you, because you are so tall and lean, it is very very stark". She also told me that she always worries when she does a double, because she knows the reality is so harsh. She said she tries to make it as clean as she can, but it is not pretty, it can't be pretty. But, if I decide on reconstruction later, they'll be able to do a clean job and make it pretty again. That will take 3 surgeries.
Today was my first shower without having drains around my neck to block my view of the scars. When I got dressed today, it took several outfits and far longer than usual to finally decide on something I could live with. This afternoon, I caught a glimpse of my profile. It was very very flat. So, being the adult, well-adjusted woman that I am, I went to bed for a few hours to watch "Sex and the City". My husband, the only one besides my surgeon and I who will really see, gave me some time and then came in to tell me that I am still beautiful and to ask me if I'm afraid people will notice, or if it is just too different.
I guess, for now, it is too stark.
Yesterday, after she pulled the last drain (ouch!), she spoke to me again about the realities of the double. She said, "It's not pretty, and with you, because you are so tall and lean, it is very very stark". She also told me that she always worries when she does a double, because she knows the reality is so harsh. She said she tries to make it as clean as she can, but it is not pretty, it can't be pretty. But, if I decide on reconstruction later, they'll be able to do a clean job and make it pretty again. That will take 3 surgeries.
Today was my first shower without having drains around my neck to block my view of the scars. When I got dressed today, it took several outfits and far longer than usual to finally decide on something I could live with. This afternoon, I caught a glimpse of my profile. It was very very flat. So, being the adult, well-adjusted woman that I am, I went to bed for a few hours to watch "Sex and the City". My husband, the only one besides my surgeon and I who will really see, gave me some time and then came in to tell me that I am still beautiful and to ask me if I'm afraid people will notice, or if it is just too different.
I guess, for now, it is too stark.
Wednesday, October 3, 2007
Not quite there
Surgeons don't tell their patients that drains will hurt and pinch and be generally a discomfort and nuisance. I know this because my surgeon told me exactly this just before she pulled out 3 of my 4 drains today. They also don't tell patients that when drains are inserted up the chest wall, removing them in one motion HURTS!
The reason they don't tell patients these things is because, when they do, patients call every day following surgery asking to have the drains removed, which the surgeon can't do until they are no longer collecting fluid. She told me this as I held my painful chest after she pulled them out. Good to know, now.
I hope to go back and have the last drain removed on Friday. This is a lower drain, so only a few inches of tube have to be pulled. So, not quite done with this step.
My pathology came back. The left side was clear, which was expected, and the right side had some cancer cells and a fibroadenoma (non-cancerous tumor), but clean margins, also good.
We talked today about next steps. I am scheduled to see the oncologist again on the 15th. But, before I do that, my surgeon has suggested another oncologist for a second opinion and further testing of my tissue with an OncoTypeDX test. This particular test has good prognostic results for recurrence with women who are node-negative but estrogen-positive, as I am, and should give us a more clear picture of what happens if I do Tamoxifen alone or chemo plus Tamoxifen. My surgeon feels that I'm on the edge because of my tumor size, so more tests would be better. I agree. It seems that the work in the next step is to find the right combination that minimizes the side effects and short-term discomfort with the best long-term prognosis to not have a recurrence.
I guess I was hoping that the mastectomy would be my discomfort, and that the rest would be easier. It seems I not quite there yet, either.
The reason they don't tell patients these things is because, when they do, patients call every day following surgery asking to have the drains removed, which the surgeon can't do until they are no longer collecting fluid. She told me this as I held my painful chest after she pulled them out. Good to know, now.
I hope to go back and have the last drain removed on Friday. This is a lower drain, so only a few inches of tube have to be pulled. So, not quite done with this step.
My pathology came back. The left side was clear, which was expected, and the right side had some cancer cells and a fibroadenoma (non-cancerous tumor), but clean margins, also good.
We talked today about next steps. I am scheduled to see the oncologist again on the 15th. But, before I do that, my surgeon has suggested another oncologist for a second opinion and further testing of my tissue with an OncoTypeDX test. This particular test has good prognostic results for recurrence with women who are node-negative but estrogen-positive, as I am, and should give us a more clear picture of what happens if I do Tamoxifen alone or chemo plus Tamoxifen. My surgeon feels that I'm on the edge because of my tumor size, so more tests would be better. I agree. It seems that the work in the next step is to find the right combination that minimizes the side effects and short-term discomfort with the best long-term prognosis to not have a recurrence.
I guess I was hoping that the mastectomy would be my discomfort, and that the rest would be easier. It seems I not quite there yet, either.
Monday, October 1, 2007
Post-surgery
I am a visual thinker. I like to be able to visualize how a web site will visually appear to the user before I begin coding, how a document will be presented as I write it, how the finished cake will look before I begin baking. Even the big-life events I try to visualize before they happen, the birth of my first daughter, meeting my second daughter for the first time, moving to a new house. The mastectomy scared me largely because I couldn't visualize what I'd look like, how my life would look, after...
Five days after the surgery, I'm still not sure how I'll look. Right now, I have four tubes coming out of my ribcage, these lead to four bulbs that collect fluid from the surgical sites. I also have two long, C-shaped scars across my chest and under my arms, a little longer on the right where the surgeon did the sentinel node biopsy. When I get dressed, I wear big shirts and sweaters over my ace bandage and the special T-shirts that hold the drain bulbs around my middle. Frankly, I look pregnant!
My day to day life right now is much much slower than I'm used to. My mom, husband and friends are taking care of my girls and the household chores, work is going on without me or holding until I get back. I'm spending way more time in bed than I have in years, I take walks every day to try and keep the back pain and leg cramps under control, I'm trying to read and watch movies, but really, my attention span is just awful right now, so I'm doing a whole lot of nothing. I blame the Vicodin for that.
I feel like I'm on hold. Wednesday I get the drains removed. Once those are gone I can begin working on stretching my arms and building up my strength again (right now I can't lift my arms above my head or lift anything at all). When I get my arms working, I can drive again and hopefully go back to work soon. As I try to get those things under control, we'll also deal with the rest of the cancer issues. The pathology report will tell us how extensive the cancer was and whether the mastectomy tissue had a clean margin. Thankfully, we already know that the lymph node was clear. After the pathology comes back, I'll meet with my oncologist to talk about the follow up (adjuvent) treatment options. Eight weeks after surgery, I'll go get fitted for prosthetics and learn how to dress with fake breasts.
Then, at some point after all of that, I'll begin my life again, post-breast cancer and with a "new normal" that I still can't quite visualize.
Five days after the surgery, I'm still not sure how I'll look. Right now, I have four tubes coming out of my ribcage, these lead to four bulbs that collect fluid from the surgical sites. I also have two long, C-shaped scars across my chest and under my arms, a little longer on the right where the surgeon did the sentinel node biopsy. When I get dressed, I wear big shirts and sweaters over my ace bandage and the special T-shirts that hold the drain bulbs around my middle. Frankly, I look pregnant!
My day to day life right now is much much slower than I'm used to. My mom, husband and friends are taking care of my girls and the household chores, work is going on without me or holding until I get back. I'm spending way more time in bed than I have in years, I take walks every day to try and keep the back pain and leg cramps under control, I'm trying to read and watch movies, but really, my attention span is just awful right now, so I'm doing a whole lot of nothing. I blame the Vicodin for that.
I feel like I'm on hold. Wednesday I get the drains removed. Once those are gone I can begin working on stretching my arms and building up my strength again (right now I can't lift my arms above my head or lift anything at all). When I get my arms working, I can drive again and hopefully go back to work soon. As I try to get those things under control, we'll also deal with the rest of the cancer issues. The pathology report will tell us how extensive the cancer was and whether the mastectomy tissue had a clean margin. Thankfully, we already know that the lymph node was clear. After the pathology comes back, I'll meet with my oncologist to talk about the follow up (adjuvent) treatment options. Eight weeks after surgery, I'll go get fitted for prosthetics and learn how to dress with fake breasts.
Then, at some point after all of that, I'll begin my life again, post-breast cancer and with a "new normal" that I still can't quite visualize.
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