May 30, 2007 I was told I had breast cancer. three surgeries, 16 rounds of chemo, 38 radiation treatments, two years of tamoxifen and nearly three years of Femara later I was told this is all about to end in January. That is when I will have my last dose of Femara and be done with breast cancer treatment. I know I have blogged about this previously but it has been weighing on my mind.
In breast cancer treatment there are a few milestones - the first surgery and first chemo treatment. Then on to radiation and you are done with active treatment. You usually get a little pill to take daily and you start seeing your doctors less and less - maybe every 3, 6 or 12 months. But your daily support system has disappeared.
Next you come to the end of your little pills. What next? I am not sure how often I will be followed by my medical and radiation oncologists. I know my surgeon's office will take charge of my mammograms and their follow up with the nurse practitioner each year. I think I will continue to see my medical oncologist for the next year because of my osteoporosis which was partly induced by Femara. I will find out next week how often I will see my radiation oncologist in the future. I have been seeing her every six months.
The hospital where I go to has a system where you rotate through your doctors and are seen by someone at least once every three months to ensure continuous follow up. I am sure this will start going to every six months at some point. But I do find it comforting that they follow me so closely. Because with my medical history, they need to be sure.
If they took all the follow up away, how would I feel? I like the continuous level of care on some level but I also find all these doctor appointments a pain in the neck. They have slowed down considerably. It is no longer uncommon for me to have a month or more between any doctor appointment. It is doubtful that I will max out my out of pocked expenses this year, for the first time in five years. This is another sign that I am 'healthier' even though my medical file continuously grows with non cancerous diagnoses and treatments.
And life goes on and the cancer roller coaster is still there so no its not over. It may never be.
Welcome to my two new ailments
As you may have deduced figured out (I hate to use big words too early in the day) I have two new fun ailments to add to my collection. I have both Rheumatoid Arthritis and Fibromyalgia. They nicely round out my previously daignosed ailments but also explain why some of my other ailments never got better and I have had so many pains that were previously blamed on my back or my lack of coordination which causes me to trip and fall and hurt another body part.
While neither of these ailments has the potential to be fatal, like cancer, they are not fun. Rheumatoid is one of those life long things that slowly progresses. The goal is to get it to stop progressing. I have early stage RA which has not yet started to erode my bones in the joints but I have many swollen joints in my hands and feet and elsewhere.
Fibromyalgia can last for months or years or forever. Actually its described as a long term pain problem that can come and go for years. A fibromyalgia flare up can last a few minutes or a few years.
I'm special since I have both fibro and RA. I have to be special. I'm convinced that I could make a lot of money when I die selling my body off to science so they can ooh and ahh at all my ailments. But I digress. I am now trying to get my treatment started for both of these. The basic recommendations for patients with both RA and fibro are:
"The best course of treatment for patients who have both fibromyalgia and rheumatoid arthritis is to first treat the rheumatoid arthritis since this condition commonly is associated with joint deformity and disability. If it is felt that the rheumatoid arthritis is controlled based on joint exam and measures of inflammation such as sedimentation rate (ESR) and C-reactive protein (CRP), but the patient still complains of pain and fatigue - consider fibromyalgia activity. Focus on improving quality of sleep through increased rest and aerobic exercise. Rule out sleep apnea if clinically significant. Consider medications used for fibromyalgia including tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRI), and gabanergic medications like Neurontin (gabapentin) or Lyrica (pregabalin)."
My rhuematologist started me on treatment for my RA - but I was allergic to both medications. I'll see how I feel by the end of the week and call her back so she can start me on Methotrexate. These medications can take months to start working - oh, joy! In the meantime, my back pain doctor who will be the primary doctor to treat my fibro, doesn't want o put me on anything like Lyrica for now. He wants my RA to get under control - one new set of drugs at a time. But he did increase the dose of my pain patch which I'll start next week.
In the meantime, I wake up in the middle of the night - sleeplessness is a symptom of fibro but also can be caused by waking up in pain. I have my little bottle of pain pills that I carry around like it is a life support system. I am also learning to cope with the fatigue. Saturday afternoon at 4pm all of a sudden I got too tired to watch TV. When you are too tired to watch a Lifetime movie, that means you are really wiped out.
I have been perfecting my ability to be lazy which isn't as hard as you may think. The cat is overjoyed with my sedentary life style as it means he can sleep on or next to me more frequently. But I still go to the gym three days a week and have gotten advice on adapting my work out until the medications kick in - in a few months. That means I may be perfecting other skills - whininess, crabbiness, crankiness.
While neither of these ailments has the potential to be fatal, like cancer, they are not fun. Rheumatoid is one of those life long things that slowly progresses. The goal is to get it to stop progressing. I have early stage RA which has not yet started to erode my bones in the joints but I have many swollen joints in my hands and feet and elsewhere.
Fibromyalgia can last for months or years or forever. Actually its described as a long term pain problem that can come and go for years. A fibromyalgia flare up can last a few minutes or a few years.
I'm special since I have both fibro and RA. I have to be special. I'm convinced that I could make a lot of money when I die selling my body off to science so they can ooh and ahh at all my ailments. But I digress. I am now trying to get my treatment started for both of these. The basic recommendations for patients with both RA and fibro are:
"The best course of treatment for patients who have both fibromyalgia and rheumatoid arthritis is to first treat the rheumatoid arthritis since this condition commonly is associated with joint deformity and disability. If it is felt that the rheumatoid arthritis is controlled based on joint exam and measures of inflammation such as sedimentation rate (ESR) and C-reactive protein (CRP), but the patient still complains of pain and fatigue - consider fibromyalgia activity. Focus on improving quality of sleep through increased rest and aerobic exercise. Rule out sleep apnea if clinically significant. Consider medications used for fibromyalgia including tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRI), and gabanergic medications like Neurontin (gabapentin) or Lyrica (pregabalin)."
My rhuematologist started me on treatment for my RA - but I was allergic to both medications. I'll see how I feel by the end of the week and call her back so she can start me on Methotrexate. These medications can take months to start working - oh, joy! In the meantime, my back pain doctor who will be the primary doctor to treat my fibro, doesn't want o put me on anything like Lyrica for now. He wants my RA to get under control - one new set of drugs at a time. But he did increase the dose of my pain patch which I'll start next week.
In the meantime, I wake up in the middle of the night - sleeplessness is a symptom of fibro but also can be caused by waking up in pain. I have my little bottle of pain pills that I carry around like it is a life support system. I am also learning to cope with the fatigue. Saturday afternoon at 4pm all of a sudden I got too tired to watch TV. When you are too tired to watch a Lifetime movie, that means you are really wiped out.
I have been perfecting my ability to be lazy which isn't as hard as you may think. The cat is overjoyed with my sedentary life style as it means he can sleep on or next to me more frequently. But I still go to the gym three days a week and have gotten advice on adapting my work out until the medications kick in - in a few months. That means I may be perfecting other skills - whininess, crabbiness, crankiness.
Living with cancer stories
Cure magazine has posted a lengthy article on new treatments for ER positive breast cancers and featured two of my fellow bloggers in it. The first one they introduce is Jill Cohen who's blog is 'Dancing with Cancer, Living with Mets; the New Normal'. I have always admired Jill as she has passed all the statistics with living with Stage IV breast cancer since 2002 - thats ten years. Ann Silberman is the other blogger who writes 'Breast Cancer? But Doctor I Hate Pink!' and writes about living with stage IV breast cancer in a very humorous way.
Back to the article, it is full of descriptions of how the hormonal drugs work and some new combinations and, more importantly, new advances. Click here for a timeline showing the progress of how research has changed the face of treating Estrogen positive breast cancers including the approval in 2012 for a new treatment for metastatic breast cancer.
I always like to read optimistic stories that show the progress that is being made in treatment of breast and other cancers. And reading others' blogs as they cope with their treatment helps me cope as well.
Back to the article, it is full of descriptions of how the hormonal drugs work and some new combinations and, more importantly, new advances. Click here for a timeline showing the progress of how research has changed the face of treating Estrogen positive breast cancers including the approval in 2012 for a new treatment for metastatic breast cancer.
I always like to read optimistic stories that show the progress that is being made in treatment of breast and other cancers. And reading others' blogs as they cope with their treatment helps me cope as well.
New doesn't always mean better
Back in 2007 when I was diagnosed with breast cancer, all the patient boards were talking about this new kind of radiation called 'Mammosite' or brachytherapy. The advantage to it was you went twice a day for one week as opposed to once a day for 8 weeks. I asked my radiation oncologist and she said it was not yet available where I was treated. I was a tiny bit disappointed but figured I could suck it up and cope with daily visits for near 8 weeks. (The biggest pain about radiation treatment is having to go EVERY day for weeks.)
A few years later, I went to a cancer treatment conference at the same hospital and they said they were just beginning to offer this mammosite radiation to selected patients and explained the procedure how beads were inserted during surgery, etc. I felt a faint tinge of regret that I hadn't had the newer treatment type. It was newer so it must be better? Right?
Wrong. Now after it has been used for five years and on more than 50,000 women a clearer picture is emerging..
Often times there are treatment advances and cancer patients look back with regret 'why couldn't that treatment hve been available when I was being treated?' Not this time. No regrets for me.
A few years later, I went to a cancer treatment conference at the same hospital and they said they were just beginning to offer this mammosite radiation to selected patients and explained the procedure how beads were inserted during surgery, etc. I felt a faint tinge of regret that I hadn't had the newer treatment type. It was newer so it must be better? Right?
Wrong. Now after it has been used for five years and on more than 50,000 women a clearer picture is emerging..
- The outcome for patients is not necessarily better for women who have mammosite radiation than regular full breast radiation.
- There is a much higher rate of side effects with mammosite radiation - 35% vs. 18% for regular radiation.
- Mammosite radiation costs twice as much as traditional radiation.
Often times there are treatment advances and cancer patients look back with regret 'why couldn't that treatment hve been available when I was being treated?' Not this time. No regrets for me.
Medications and me
Medications have a tendency not to agree with me. As a child back in the dark ages of the 1960s and 1970s, if I had strep or an ear infection, the local pediatrician would prescribe Penicillin, the miracle drug. At one point, I remember her saying that I had a sensitivity to it which I promptly ignored because I was a teenager. I don't think my mother remembers that either..
When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.
(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)
I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.
Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.
Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.
Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.
Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.
When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.
(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)
I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.
Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.
Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.
Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.
Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.
Communication, optimism, and honesty
A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
- "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ¬patients with advanced colo-rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
- Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
The Perils of Pink
I finally found an article which explains the perils of pinkification better than any attempt I have ever made. You can read the whole thing here or you can read my cliff notes version below.
“The biggest misconception people have is that the proceeds from a product or fundraising event are directly contributed to the cause, or toward progress in ending the breast cancer epidemic, and that’s an assumption which may not be true,” said Gayle Sulik, author of “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.” Whether it’s a entering a walk-a-thon or buying a dusky-rose pair of sneakers, Sulik recommended reading the fine print. “If there are not specifics, if it’s a general, ‘All profits go to support the fight against breast cancer,’ that’s a red flag,” she cautioned.
Here are three product examples:
"The Breast Cancer Research Foundation, for example, uses less than nine cents per dollar raised on fundraising and administrative expenses, compared to the United Breast Cancer Foundation, which spends a whopping 72 cents per dollar before beneficiaries see any of that money. Watchdogs like CharityNavigator.org can help you compare charities to see where your money is going."
The next consideration is there a cap on the amount that goes to the charity - either an end date or a total amount:
When you find a product that supports the cause transparently — and there are plenty out there — try to find out whether there’s a cap on the donation, meaning the donation ends once a certain amount has been met. If the promotion mentions a specific time period and you buy the product after the cut-off date, the would-be donation may go straight to the company, so check for a time limit.
Some tips for where to donate your money are:
“The biggest misconception people have is that the proceeds from a product or fundraising event are directly contributed to the cause, or toward progress in ending the breast cancer epidemic, and that’s an assumption which may not be true,” said Gayle Sulik, author of “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.” Whether it’s a entering a walk-a-thon or buying a dusky-rose pair of sneakers, Sulik recommended reading the fine print. “If there are not specifics, if it’s a general, ‘All profits go to support the fight against breast cancer,’ that’s a red flag,” she cautioned.
Here are three product examples:
- Hershey's Kisses for the Cure Pink Ribbon Music Box, retail price $49.99 has a major selling point that portion of the proceeds to be donated to help fight breast cancer. That amount might be a $1.00 and the authors could not find out what charity the money was going to. Recommendation - skip it.
- Gaiam Ink Ribbon Yoga Mat, retail price $21.98. $1 goes to charity.
- "Andee" Breast Cancer Watch from Coach, retail price $258, $20 goes to charity.
"The Breast Cancer Research Foundation, for example, uses less than nine cents per dollar raised on fundraising and administrative expenses, compared to the United Breast Cancer Foundation, which spends a whopping 72 cents per dollar before beneficiaries see any of that money. Watchdogs like CharityNavigator.org can help you compare charities to see where your money is going."
The next consideration is there a cap on the amount that goes to the charity - either an end date or a total amount:
When you find a product that supports the cause transparently — and there are plenty out there — try to find out whether there’s a cap on the donation, meaning the donation ends once a certain amount has been met. If the promotion mentions a specific time period and you buy the product after the cut-off date, the would-be donation may go straight to the company, so check for a time limit.
Some tips for where to donate your money are:
- The smaller local charities who are helping people you know in your community.
- Breast Cancer Research Foundation
- MD Anderson
- Johns Hopkins Avon Breast Center
- Lynn Sage Cancer Research Foundation
- Memorial-Sloan Kettering Cancer Center
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