I have many friends who, after cancer, get back to their old lives for the most part. I'm not talking about that 'new normal' bull, but just doing normal things like going back to work, taking part in all their family activities and all sorts of regular, every day life things.
Me, I did not get to go back to my regular life after breast cancer. My body had other plans for me. It decided it was time to fall apart.
After breast cancer, I got gall stones and had my gallbladder out six months after radiation ended. That winter I slipped on the ice, landed on my left hand and started all my lymphedema crap.
The following fall my back started hurting. When I realized I was taking OTC pain meds every day, I went to the doctor. I ended up being diagnosed with degenerating disks among other things. Later I sprained my ankle badly that included bone chips. I also hurt my right knee, again - previously injured skiing in 2001.
That went on fine until three years later when I was diagnosed with rheumatoid arthritis and fibromyalgia which is a whole barrel of fun. In 2015, I fell in my backyard and managed to tear my ACL in my left knee.
What else? I don't know. I have had basic dental stuff, possible recurrence with thyroid cancer that turned out to be nothing, and I can't remember anything. I have been to PT probably five times for different ailments.
So, I am not a healthy person post cancer. I have a very dilapidated body post two cancers. I must be 'healthy' due to all the medications I take and the doctor appointments that I have. In the first five months of this year, I have had 27 appointments with doctors and dentists.
I'm still here. I may not be the healthy person I once was. But I am here.
Wednesday, May 31, 2017
Monday, May 29, 2017
Is Moving On After Cancer A Myth?
I am approaching my ten year anniversary of the ten year mark after my breast cancer diagnosis. Am I supposed to celebrate? I think so but I am not sure how much of a celebration it is. It doesn't mean I can say it is gone for good. It just means that in the ten years since I was diagnosed with breast cancer and I am still here.
Now I do know that is a good thing. But am I supposed to celebrate? But I don't feel like celebrating. I am not sure that I should celebrate. I certainly won't be having a party.
The last ten years have been a growing time for me emotionally (and for my waistline). I have had many new experiences that I would never have had without breast cancer. Some I can appreciate - like learning to fly fish or making lots of new friends - but some not so much - my first CT scan, chemotherapy....
I have met many wonderful people during these past ten years. However, I have lost many of these new friends as well to cancer. I have also held hands, physically and emotionally, with many people who I never would have met, to help them and to help me coping with cancer. Some of that is good, but some of that - I still miss many friends.
My breast cancer diagnosis was not my first dealings with cancer. I had been diagnosed with thyroid cancer twenty five years and some months earlier.
It took me a long time to get my life back together after that diagnosis but I was never the same. Actually I don't really know. I was diagnosed at the age of 19 while in college so was never really an adult on my own without cancer. I don't know if I would be different if I had never had cancer because I never had the opportunity. It took me so long to deal with that cancer diagnosis, I don't think I 'grew' that much.
Since I can't tell if I had grown emotionally after that cancer diagnosis because I have no comparison. And am I any less of a person than I would have been? How much did cancer change me? I have no idea. Again, I have no comparison on that how can I tell how much my cancer diagnosis changed me and my life again?
I go back to my question - is moving on after cancer a myth? I don't know. I don't know how much I have moved on because I can't tell how much I changed in the beginning.
All I do know is that once someone says 'you have cancer' you are changed. Your focus on life is very different. You question what is normal to every one else - life insurance in case anything happens to your children (if you can still have children), or changing jobs and getting new health insurance (with a pre-existing condition). Or planning for the future? Why should I save for retirement if it looks like I probably won't be here for it?
Personally I believe that anyone who says you can move on after cancer, has never had cancer. They are the same people who came up with the soldier/battle/warrior/s-word stuff. But I don't have the comparison so I can never be sure.
Now I do know that is a good thing. But am I supposed to celebrate? But I don't feel like celebrating. I am not sure that I should celebrate. I certainly won't be having a party.
The last ten years have been a growing time for me emotionally (and for my waistline). I have had many new experiences that I would never have had without breast cancer. Some I can appreciate - like learning to fly fish or making lots of new friends - but some not so much - my first CT scan, chemotherapy....
I have met many wonderful people during these past ten years. However, I have lost many of these new friends as well to cancer. I have also held hands, physically and emotionally, with many people who I never would have met, to help them and to help me coping with cancer. Some of that is good, but some of that - I still miss many friends.
My breast cancer diagnosis was not my first dealings with cancer. I had been diagnosed with thyroid cancer twenty five years and some months earlier.
It took me a long time to get my life back together after that diagnosis but I was never the same. Actually I don't really know. I was diagnosed at the age of 19 while in college so was never really an adult on my own without cancer. I don't know if I would be different if I had never had cancer because I never had the opportunity. It took me so long to deal with that cancer diagnosis, I don't think I 'grew' that much.
Since I can't tell if I had grown emotionally after that cancer diagnosis because I have no comparison. And am I any less of a person than I would have been? How much did cancer change me? I have no idea. Again, I have no comparison on that how can I tell how much my cancer diagnosis changed me and my life again?
I go back to my question - is moving on after cancer a myth? I don't know. I don't know how much I have moved on because I can't tell how much I changed in the beginning.
All I do know is that once someone says 'you have cancer' you are changed. Your focus on life is very different. You question what is normal to every one else - life insurance in case anything happens to your children (if you can still have children), or changing jobs and getting new health insurance (with a pre-existing condition). Or planning for the future? Why should I save for retirement if it looks like I probably won't be here for it?
Personally I believe that anyone who says you can move on after cancer, has never had cancer. They are the same people who came up with the soldier/battle/warrior/s-word stuff. But I don't have the comparison so I can never be sure.
Sunday, May 28, 2017
Distractions
I realize I haven't been blogging much for the past month or so. We went away for a weekend, we are on our second set of houseguests. This one came with a dog who freaked out one of our cats (who should have stood his ground and growled at the dog and he would have hid because he is really scared of cats).
I have also been dealing with lots of fatigue. What is fatigue? When you need 12 hours of sleep each day and then make it through. I also keep getting myself in places where all of a sudden I am so tired I can't function.
An example is this past Thursday. I got up and went to the grocery store and library in the morning. I didn't carry in all the groceries - only the perishables. I relaxed for a couple of hours and went to my knitting group. On the way home I stopped at a garden center for more vegetable plants. All of a sudden I was so exhausted it was almost too much to walk to my car and drive home. Then I had to lie down for about two hours just to recover to make dinner.
There is one thing of needing sleep. There is another that is too tired to function and not needing sleep. Just needing down time. Thursday afternoon I couldn't have slept but I just needed to be off my feet, watching bad tv in bed. (What is bad tv? TV which provides no redeeming qualities and is barely entertaining.)
I have had almost two weeks without doctor appointments - I haven't had one since the 10th. But this coming week I have the dentist, rheumatologist and someone else who I can't remember. And I need to get my bloodwork done on Tuesday.
I do not have that busy a schedule and sometimes even get together with friends. I spend a lot of time at home weaving on my loom and knitting. I also get to the library regularly....
Just a lot of distractions in my life. The benefit is the distract me from the state of my health. I am and will always be the most unhealthy person in my family. I have more health problems than my parents and they are in their 80s. My siblings are disgustingly healthy as well. My husband is definitely healthier than me too.
But all these distractions do lead to a basically happy life these days. I think that is the most important thing.
I have also been dealing with lots of fatigue. What is fatigue? When you need 12 hours of sleep each day and then make it through. I also keep getting myself in places where all of a sudden I am so tired I can't function.
An example is this past Thursday. I got up and went to the grocery store and library in the morning. I didn't carry in all the groceries - only the perishables. I relaxed for a couple of hours and went to my knitting group. On the way home I stopped at a garden center for more vegetable plants. All of a sudden I was so exhausted it was almost too much to walk to my car and drive home. Then I had to lie down for about two hours just to recover to make dinner.
There is one thing of needing sleep. There is another that is too tired to function and not needing sleep. Just needing down time. Thursday afternoon I couldn't have slept but I just needed to be off my feet, watching bad tv in bed. (What is bad tv? TV which provides no redeeming qualities and is barely entertaining.)
I have had almost two weeks without doctor appointments - I haven't had one since the 10th. But this coming week I have the dentist, rheumatologist and someone else who I can't remember. And I need to get my bloodwork done on Tuesday.
I do not have that busy a schedule and sometimes even get together with friends. I spend a lot of time at home weaving on my loom and knitting. I also get to the library regularly....
Just a lot of distractions in my life. The benefit is the distract me from the state of my health. I am and will always be the most unhealthy person in my family. I have more health problems than my parents and they are in their 80s. My siblings are disgustingly healthy as well. My husband is definitely healthier than me too.
But all these distractions do lead to a basically happy life these days. I think that is the most important thing.
Thursday, May 25, 2017
What To Do When A Family Member Has Cancer
Its different when a friend has cancer than when its a family member. When you live in the same house as someone with cancer, you need to be a bit more proactive and protective than when its not someone in the same house.
For the person with cancer, they are probably feeling a bit stressed, to say the least. They may isolate themselves or they may act in an uncharacteristic manner - drinking more, eating more or less, etc. Their whole being is probably focused on their diagnosis and how they feel, which may or may not be very well. They are contemplating their odds, their upcoming treatment, etc.
This is not a time to make undue stress on them. They need their time to regain some emotional equilibrium. They do not need reminders to take their medications, eat food, or interact with people. You can ask once but do not nag or stress them. They are not in a good place.
The most important things that they need right now is support. They may need trips to the doctor. They may want help finding more research on their health.
They do not need aggravation. Trust me. I've been there.
Family relations can be complicated. This is not a time to complicate them further. This is a time to uncomplicate them so quit all the drama.
For the person with cancer, they are probably feeling a bit stressed, to say the least. They may isolate themselves or they may act in an uncharacteristic manner - drinking more, eating more or less, etc. Their whole being is probably focused on their diagnosis and how they feel, which may or may not be very well. They are contemplating their odds, their upcoming treatment, etc.
This is not a time to make undue stress on them. They need their time to regain some emotional equilibrium. They do not need reminders to take their medications, eat food, or interact with people. You can ask once but do not nag or stress them. They are not in a good place.
The most important things that they need right now is support. They may need trips to the doctor. They may want help finding more research on their health.
They do not need aggravation. Trust me. I've been there.
Family relations can be complicated. This is not a time to complicate them further. This is a time to uncomplicate them so quit all the drama.
Wednesday, May 24, 2017
Managing Fatigue
Do you remember how tired you felt during chemo and at the end of radiation? That's how tired I feel every day. As a result, my new word of the year is 'no'. As in:
- No, I am not going anywhere
- No, I can't go there tomorrow
- No, the only places I am going are the ones I carefully planned.
Nothing else. If you want me to do something with you, we need to plan ahead. (Unless an emergency and then I am happy to help.)
I cannot drop things and go to the movies or visit someone. I plan what I am going to do and then I plan how long I have to rest and recover.
Yesterday I had a fairly normal day and met a friend for lunch (and gave a neighbor a ride in an emergency) but then didn't sleep that well last night so it took me a couple of hours to get my butt out of bed. After I go to the gym and stop by my parent's house, it will be a lazy day for me. Nothing more. If I feel energetic I will set up my loom while sitting in front of the TV watching LMN movies...
And no, I am not up for any more.
Managing fatigue takes a lot of work. It takes planning and thought. I know I have obligations but I work carefully to manage meeting them. Just because I no longer work, it doesn't mean I have spare time for fun stuff. Any spare time goes to doctor appointments.
I think I sound really negative here but I often feel pressured that I am letting people down and can't get together as much as both of us would like. I'll just keep practicing the word 'no' and hope I do not offend.
Yesterday I had a fairly normal day and met a friend for lunch (and gave a neighbor a ride in an emergency) but then didn't sleep that well last night so it took me a couple of hours to get my butt out of bed. After I go to the gym and stop by my parent's house, it will be a lazy day for me. Nothing more. If I feel energetic I will set up my loom while sitting in front of the TV watching LMN movies...
And no, I am not up for any more.
Managing fatigue takes a lot of work. It takes planning and thought. I know I have obligations but I work carefully to manage meeting them. Just because I no longer work, it doesn't mean I have spare time for fun stuff. Any spare time goes to doctor appointments.
I think I sound really negative here but I often feel pressured that I am letting people down and can't get together as much as both of us would like. I'll just keep practicing the word 'no' and hope I do not offend.
Tuesday, May 23, 2017
I Keep Forgetting To Blog
I mean to. It really helps me cope with life. I will say the road to hell is paved with good intentions.... so maybe I am on the way to hell in a handbasket.
But anyway, there is a lot going on in my life right now but I am not ready to talk about it yet. I will, when I am ready. Its not my story to tell either. I will eventually get to it.
My biggest distraction in life right now is that it is gardening season. My abilities to garden are very limited but its one of the things that I really enjoy. I can't did things up, move anything heavy or even garden for very long.
This year, my husband built me a massive raised bed garden with a five foot fence to keep out the predators - deer, fox, bobcats, skunks, etc. The cats are better at small predators than large ones. Last year, he also built me a huge flower garden.
I really enjoy gardening, but I said that already. I have been having fun with my vegetable garden and my flower garden. I have lots of little baby vegetable plants so far. I failed at starting vegetables from seeds. I mean I did start them, managed to kill half of them, forgot to label some and I can't tell sunflowers from cucumbers and zucchini to date.
This is my favorite time of year and I am very happy to be distracted by gardening. I would much rather stress about gardening than my health or any medical issue.
In the meantime, I will try to remember to blog.... but I am heading for the garden in a few minutes.... because its another day.
But anyway, there is a lot going on in my life right now but I am not ready to talk about it yet. I will, when I am ready. Its not my story to tell either. I will eventually get to it.
My biggest distraction in life right now is that it is gardening season. My abilities to garden are very limited but its one of the things that I really enjoy. I can't did things up, move anything heavy or even garden for very long.
This year, my husband built me a massive raised bed garden with a five foot fence to keep out the predators - deer, fox, bobcats, skunks, etc. The cats are better at small predators than large ones. Last year, he also built me a huge flower garden.
I really enjoy gardening, but I said that already. I have been having fun with my vegetable garden and my flower garden. I have lots of little baby vegetable plants so far. I failed at starting vegetables from seeds. I mean I did start them, managed to kill half of them, forgot to label some and I can't tell sunflowers from cucumbers and zucchini to date.
This is my favorite time of year and I am very happy to be distracted by gardening. I would much rather stress about gardening than my health or any medical issue.
In the meantime, I will try to remember to blog.... but I am heading for the garden in a few minutes.... because its another day.
Saturday, May 20, 2017
New News on Lymphedema
Lymphedema has long been known as a life long complication from breast cancer surgery.
I am not a doctor but here is my understanding of lymphedema: the lymph system is a second system in your body connecting hundreds of lymph nodes which help clean out your body and heal injuries or diseases. When you have surgery the lymph system is often impaired because it does not heal and reconnect after. If the lymph system is unconnected to the rest, you can end up with swollen body parts, or lymphedema.
After breast cancer if a bunch of nodes are removed under your arm as with an axillary node dissection, you can end up with problems. In previous decades when a radical mastectomy was routine treatment for breast cancer, lymphedema occurred regularly for patients. Now they skip start with the sentinel nodes which are assumed where breast cancer starts to spread and then only if they are positive, do you get an axillary node dissection.
What they told me is that if you have an axillary node dissection the chances were high of getting lymphedema. I was told that do not strain your arm, no shots or needle pricks, or blood pressure cuffs, no purse straps over your arm, no, no, no, no, no.... Basically baby that arm for the rest of your life. I do regular exercises at the gym but I do them at lower weights than my right so I don't strain it. Blah, blah, blah, blah....
So with me, I had one tiny positive node in the sentinel node so I had an axillary node dissection after my lumpectomy. Then I had chemo and radiation. Then I followed all directions and was fine, until I fell the following winter and used my left arm to break my fall. And voila, lymphedema (and no its never goes away).
But now there is new information on lymphedema. I got this from Barbara over at Let Life Happen where she wrote about "Debunking the Lymphedema Risk". There was a recent new study done on causes of lymphedema.
"The study found that chemotherapy, more advanced disease and greater than normal body weight significantly increased the risk of lymphedema for patients who had surgery of lymph nodes under their arms to assess the spread of cancer. Radiation therapy also strongly correlated with lymphedema for patients undergoing axillary node dissection (ALND), the more invasive form of axillary surgery.
I am not a doctor but here is my understanding of lymphedema: the lymph system is a second system in your body connecting hundreds of lymph nodes which help clean out your body and heal injuries or diseases. When you have surgery the lymph system is often impaired because it does not heal and reconnect after. If the lymph system is unconnected to the rest, you can end up with swollen body parts, or lymphedema.
After breast cancer if a bunch of nodes are removed under your arm as with an axillary node dissection, you can end up with problems. In previous decades when a radical mastectomy was routine treatment for breast cancer, lymphedema occurred regularly for patients. Now they skip start with the sentinel nodes which are assumed where breast cancer starts to spread and then only if they are positive, do you get an axillary node dissection.
What they told me is that if you have an axillary node dissection the chances were high of getting lymphedema. I was told that do not strain your arm, no shots or needle pricks, or blood pressure cuffs, no purse straps over your arm, no, no, no, no, no.... Basically baby that arm for the rest of your life. I do regular exercises at the gym but I do them at lower weights than my right so I don't strain it. Blah, blah, blah, blah....
So with me, I had one tiny positive node in the sentinel node so I had an axillary node dissection after my lumpectomy. Then I had chemo and radiation. Then I followed all directions and was fine, until I fell the following winter and used my left arm to break my fall. And voila, lymphedema (and no its never goes away).
But now there is new information on lymphedema. I got this from Barbara over at Let Life Happen where she wrote about "Debunking the Lymphedema Risk". There was a recent new study done on causes of lymphedema.
"The study found that chemotherapy, more advanced disease and greater than normal body weight significantly increased the risk of lymphedema for patients who had surgery of lymph nodes under their arms to assess the spread of cancer. Radiation therapy also strongly correlated with lymphedema for patients undergoing axillary node dissection (ALND), the more invasive form of axillary surgery.
"“Lymphedema rate was significantly lower among patients undergoing axillary surgery without these additional risk factors,” says study co-author Judy Boughey, M.D., FACS, professor of surgery and research chair, department of surgery at Mayo Clinic. “We must recognize that today, breast cancer is no longer a disease treated primarily through surgery, and many therapies impact the risk of this chronic condition. Risk factors appeared to be cumulative, affecting women in a step-like fashion.”
So this was my chronology with my stage II breast cancer: lumpectomy (June), axillary node dissection (July), chemotherapy (August through December, lumpectomy (December), radiation (late January through early March). I was normal body weight before breast cancer. After breast cancer about the same. My weight gain came later.... So I did not have advanced disease nor overweight but I did have chemotherapy and radiation.
Nevermind me, I just find it very interesting that the sole cause was not the surgery but the combination of surgery, radiation, and chemotherapy.
So this was my chronology with my stage II breast cancer: lumpectomy (June), axillary node dissection (July), chemotherapy (August through December, lumpectomy (December), radiation (late January through early March). I was normal body weight before breast cancer. After breast cancer about the same. My weight gain came later.... So I did not have advanced disease nor overweight but I did have chemotherapy and radiation.
Nevermind me, I just find it very interesting that the sole cause was not the surgery but the combination of surgery, radiation, and chemotherapy.
Friday, May 19, 2017
Those Nasty Complications
I often wonder in cancer treatment, which is worse - treatment or complications? I think complications win that one. To me complications mean more doctor visits, more drugs, more expense, more whininess, and less happy results.
In recent years, we have had the whats-her-name effect (this is what happens when you blog too early in the day) where women are getting bilateral and unilateral mastectomies at higher rates than in the past. There is no real proof that mastectomies are better than lumpectomies with radiation for early stage breast cancer but many women opt for them anyway.
But there is a problem. New research (because we always need new research) shows that more often mastectomies are often accompanied by side effects and complications.
"Researchers identified 105,211 women with early breast cancer diagnosed between 2000 and 2011 and identified treatment complications within 24 months of diagnosis and compared complications by treatment. ...
"Lumpectomy plus whole breast irradiation treatment was the most commonly used treatment. Mastectomy plus reconstruction was associated with nearly twice the complication risk of lumpectomy plus whole breast irradiation treatment (54.3% vs. 29.6% complication risk among younger women with private insurance and 66.1% vs. 37.6% complication risk among older women with Medicare) and was also associated with higher adjusted total cost (an average $22,481 more for younger women; an average $1,748 greater for older women with Medicare) and complication-related cost (an average $9,017 greater for the younger cohort; $2,092 greater for the Medicare cohort). Brachytherapy had modestly higher total cost and complications than whole breast irradiation treatment. Lumpectomy alone entailed lower cost and complications in the Medicare cohort only."
In recent years, we have had the whats-her-name effect (this is what happens when you blog too early in the day) where women are getting bilateral and unilateral mastectomies at higher rates than in the past. There is no real proof that mastectomies are better than lumpectomies with radiation for early stage breast cancer but many women opt for them anyway.
But there is a problem. New research (because we always need new research) shows that more often mastectomies are often accompanied by side effects and complications.
"Researchers identified 105,211 women with early breast cancer diagnosed between 2000 and 2011 and identified treatment complications within 24 months of diagnosis and compared complications by treatment. ...
"Lumpectomy plus whole breast irradiation treatment was the most commonly used treatment. Mastectomy plus reconstruction was associated with nearly twice the complication risk of lumpectomy plus whole breast irradiation treatment (54.3% vs. 29.6% complication risk among younger women with private insurance and 66.1% vs. 37.6% complication risk among older women with Medicare) and was also associated with higher adjusted total cost (an average $22,481 more for younger women; an average $1,748 greater for older women with Medicare) and complication-related cost (an average $9,017 greater for the younger cohort; $2,092 greater for the Medicare cohort). Brachytherapy had modestly higher total cost and complications than whole breast irradiation treatment. Lumpectomy alone entailed lower cost and complications in the Medicare cohort only."
And what do side effects and complications mean? More doctor appointments, more treatment, and more costs. I don't know about you but honestly, in addition to better health, I am all for fewer doctor appointments, less treatment, and less cost.
If I could go to one doctor once a year and get treated for everything all at once, I would be much happier. But since that isn't going to happen, I still want the fewest visits possible.
If I am given a choice of two treatment possibilities. One has less invasive surgery but would require additional treatment and the other has more invasive surgery but no additional treatment, but has a higher risk of more complications? I think I would always go for the less invasive ones that requires more treatment.
More complicated is never better.
(Whats-her-name is Angelina Jolie. I think I finally woke up.)
Wednesday, May 17, 2017
A Well Explained Reason for Ditching the S-Word
I hate the S-word. I am not an s-word. I am a person living with cancer. Its always just bugged me. A lot. I hate the fact that ACS designates anyone who has been diagnosed with cancer as an s-word.
But finally I found someone who really explains it well as to why you should ditch the s-word. I was catching up and finally reading a copy of Readers Digest from last September and came across an article called "Don't Call me a Cancer Survivor". The author is a hospital chaplain for the last three decades or so and was diagnosed with breast cancer in 2005. With her diagnosis she learned a lot.
"One surprising thing I found was that only a small part of the cancer experience is about medicine. Most of it is about feelings, faith, losing and finding your identity, and discovering strength and flexibility you never even knew you had. It’s about realizing that the most important things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty—and learning that the way to get out of almost anything is to say “I have cancer.”"
Upon her diagnosis she was instantly given pink ribbons, told about the upcoming walk, luncheons, and more. Someone actually told her that her cancer diagnosis was her 'wake up call'. (She wanted to hit him but couldn't because it was right after surgery. I would have hit him for her if I was there.)
She realized that being a cancer s-word was taking over her life.
"That’s when I told myself, “Claim your experience; don’t let it claim you.” We know that the way to cope with trauma, loss, or any other life-changing experience is to find meaning. But here’s the thing: No one can tell us what that meaning is. We have to decide what it means. And that meaning can be quiet and private—we don’t need to start a foundation, write a book, or work on a documentary. Instead, perhaps we make one small decision about our lives that can bring about big change."
She did move on and became happier. As part of being a chaplain she sat with many cancer patients through their treatment. She also got to see her former patients later to see how they were doing. She met with one woman and her daughters to learn that she was now NED. She started telling her story of diagnosis and treatment again and that emotional roller coaster.
"At that moment, her daughters stood up and left to get coffee. I handed the woman a tissue and gave her a hug. Then, because I cared for her, I told her, “Get down off your cross.” She said, “What?!” I repeated it. To this woman’s credit, she was able to talk about why she was clinging to her survivor identity. It got her attention, and people took care of her, for a change. Now it was having the opposite effect and pushing people away—they kept leaving to get coffee."
But finally I found someone who really explains it well as to why you should ditch the s-word. I was catching up and finally reading a copy of Readers Digest from last September and came across an article called "Don't Call me a Cancer Survivor". The author is a hospital chaplain for the last three decades or so and was diagnosed with breast cancer in 2005. With her diagnosis she learned a lot.
"One surprising thing I found was that only a small part of the cancer experience is about medicine. Most of it is about feelings, faith, losing and finding your identity, and discovering strength and flexibility you never even knew you had. It’s about realizing that the most important things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty—and learning that the way to get out of almost anything is to say “I have cancer.”"
Upon her diagnosis she was instantly given pink ribbons, told about the upcoming walk, luncheons, and more. Someone actually told her that her cancer diagnosis was her 'wake up call'. (She wanted to hit him but couldn't because it was right after surgery. I would have hit him for her if I was there.)
She realized that being a cancer s-word was taking over her life.
"That’s when I told myself, “Claim your experience; don’t let it claim you.” We know that the way to cope with trauma, loss, or any other life-changing experience is to find meaning. But here’s the thing: No one can tell us what that meaning is. We have to decide what it means. And that meaning can be quiet and private—we don’t need to start a foundation, write a book, or work on a documentary. Instead, perhaps we make one small decision about our lives that can bring about big change."
She did move on and became happier. As part of being a chaplain she sat with many cancer patients through their treatment. She also got to see her former patients later to see how they were doing. She met with one woman and her daughters to learn that she was now NED. She started telling her story of diagnosis and treatment again and that emotional roller coaster.
"At that moment, her daughters stood up and left to get coffee. I handed the woman a tissue and gave her a hug. Then, because I cared for her, I told her, “Get down off your cross.” She said, “What?!” I repeated it. To this woman’s credit, she was able to talk about why she was clinging to her survivor identity. It got her attention, and people took care of her, for a change. Now it was having the opposite effect and pushing people away—they kept leaving to get coffee."
That is exactly my point. An s-word is not a person. Its a label. It might help you get through treatment but its not you. Let yourself deal with the experience and go on with life. Do not let you become someone who you aren't.
Tuesday, May 16, 2017
Ignore the Statistics
Once again I have been faced with explaining that a 3% death rate does equal a 97% survival rate. Often cancer patients are given numbers which they do not understand and they focus on the bad part.
First of all, you are not a number, you are a human being.
Second, numbers are generalizations.
Third, numbers should be ignored.
Finally, if you must look at numbers look at the positive side of them. Its not a 5% death rate, its a 95% survival rate. That sounds much better.
Sheesh....
First of all, you are not a number, you are a human being.
Second, numbers are generalizations.
Third, numbers should be ignored.
Finally, if you must look at numbers look at the positive side of them. Its not a 5% death rate, its a 95% survival rate. That sounds much better.
Sheesh....
Sunday, May 14, 2017
Declining Health Abilities
Yesterday, a friend and I went to the NH Sheep and Wool Festival. We are knitters,weavers, etc and bona fide yarn junkies so it was the perfect trip. However, we got exhausted. We even went and napped in the car in the afternoon so we could make it to the events we wanted to see.
On the way up, we talked about our declining parent's health. Her father is in his early 90s, my parents are in their late 80s. All of them have physically declined over the years, as would be expected for their age, but mentally are going fine.
This morning the two of us feel beat up and are exhausted after yesterday's walking and sitting. And napping. Today we are feeling closer to our parent's ages than our ages (37 still in case you are asking). I slept a solid 10 hours last night and that helps me a lot to get through today.
Days like this make me realize how much my health abilities have declined, similar to my parents. But I feel it is more expected for them than for us.
I am not trying to run a marathon, something that I have never dreamed of doing, or even go on a 15 mile hike as I have in the past. I am talking going for a day of fun which included more sitting than walking.
I realize I am getting older but I think my brain thinks I am 37 but my body thinks I'm 80. And its just not fair.
On the way up, we talked about our declining parent's health. Her father is in his early 90s, my parents are in their late 80s. All of them have physically declined over the years, as would be expected for their age, but mentally are going fine.
This morning the two of us feel beat up and are exhausted after yesterday's walking and sitting. And napping. Today we are feeling closer to our parent's ages than our ages (37 still in case you are asking). I slept a solid 10 hours last night and that helps me a lot to get through today.
Days like this make me realize how much my health abilities have declined, similar to my parents. But I feel it is more expected for them than for us.
I am not trying to run a marathon, something that I have never dreamed of doing, or even go on a 15 mile hike as I have in the past. I am talking going for a day of fun which included more sitting than walking.
I realize I am getting older but I think my brain thinks I am 37 but my body thinks I'm 80. And its just not fair.
Wednesday, May 10, 2017
Losing Track of Time
I haven't worked really in a year and a half. I have no reason to watch the clock very much - except for doctor appointments. I never look at a calendar. I have to think to figure out what day of the week it is - and am often wrong.
I completely lose track of time.
I was talking to a friend yesterday and she said that her problem she couldn't remember anything. I never can remember anything either but I find losing time is more important. Priorities I guess.
This also causes me to forget to blog.
Maybe I should try wearing a watch again. But I can't because of lymphedema and RA.
I completely lose track of time.
I was talking to a friend yesterday and she said that her problem she couldn't remember anything. I never can remember anything either but I find losing time is more important. Priorities I guess.
This also causes me to forget to blog.
Maybe I should try wearing a watch again. But I can't because of lymphedema and RA.
Sunday, May 7, 2017
Taking Charge of My Medical Crap - Again
I try to be in charge of my medical care. I really do. I take notes at appointments and I write little notes to myself in my calendar on things to ask my doctors at each visit. I am not sure if I am weird for doing this or not but I have no brain so I can't remember anything.
In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)
After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.
I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.
But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.
I think I need to take more notes.
In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)
After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.
I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.
But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.
I think I need to take more notes.
Saturday, May 6, 2017
A Rerun: Helping People With Cancer
I know this is a popular subject with people with cancer - how and how not to help them. Some people are idiots. I can tell you story after story about ones I have met along the way.
- You aren't going to get cancer by mentioning the word 'cancer'. Seriously? Its an ugly word but its not an obscenity that will cause someone to pass out. You can't ignore the elephant in the room. Ask how their treatment is going, how they are feeling (but not that vague, polite 'how are you today?' bullshit).
- Never tell them about your cousin's neighbor's dog walker's hair dresser's sister's cancer treatment. You are not a doctor. It probably wasn't the same type of cancer, and even if it was, everyone's cancer is different. You do not want someone to start wondering about their treatment plan - or to think about how stupid you just sounded.
- No, they probably are not about to die so don't ask them 'how long do they have?'. I find that one pretty damn rude if you ask me. And people have asked me that. I probably gave them some gaping look and meant to say 'about another 50 years'.
- Don't be shy. You aren't to get cancer by being in the same room with them, shopping for them, eating a meal together. If you want to help them, you need to go see them and talk to them. Call first and ask 'I'm going to the grocery store, can I get anything for you?' or 'can I drive your kids to school for you tomorrow or take you to a doctor appointment?' 'Can I bring you a casserole for your family to eat later this week?' If you say, how can I help, they may not be sure what to say. You can do their laundry, clean their house, mow their lawn.
- Be smart. Someone in cancer treatment probably has limited energy so going to the late movie, a museum where you are on your feet or a shopping spree at the mall are probably not going to work. Nor are going out for drinks or bar hopping. Or a 40 mile bike ride. Or surfing. Or mountain climbing.... I can go on. Ask them do they want to get out and do something and let them tell you what they would like to do.
- Be respectful of them and their time. They may or may not be feeling very well. If you are visiting them and they appear to be either trying to stay awake or not run to the bathroom, it's time for you to leave. When you arrive, ask them if they are up for a visit or just drop off what you brought and leave. I know I would try to be polite with visitors and sometimes I really just needed to sleep and not throw up.
- Do not visit anyone who is an inpatient in a hospital unless they tell you they can. People in hospitals are usually pretty sick, have not gotten enough sleep (because you can never sleep in a hospital), and look like crap because they are in bed, or are bored to tears. Boredom welcomes visitors; pain, lack of sleep, and looking/feeling like crap hate visitors. Call first and ask what you can bring. Do not just show up at a patient's room EVER!
Friday, May 5, 2017
This is How Tired I Am
This morning I slept through my husband's alarm. I heard him shower and thought he was a taking a late night shower before bed. I did get out of bed for a minute and got a cup of coffee to sip while in bed. I woke up to a cold cup of coffee two hours later. It has taken me another two hours to get out of bed to my computer.
The problem is I need to leave here in another two hours and be alive enough to go to the gym and then a doctor appointment before driving home in a torrential rainstorm. I can't wait.
But I get to sleep late again tomorrow.
This is fatigue for me. I get so tired that I can't function. The reason i got so tired is that i have been running around for the last three days and got up way too early the past two days. Its not that I just need sleep. I need rest as well. Getting up early in the morning is really hard on me.
I can't stay up late so I don't try. But sometimes I just have to get out of bed too early.
My plan for the weekend: bed early, sleep late, repeat.
The problem is I need to leave here in another two hours and be alive enough to go to the gym and then a doctor appointment before driving home in a torrential rainstorm. I can't wait.
But I get to sleep late again tomorrow.
This is fatigue for me. I get so tired that I can't function. The reason i got so tired is that i have been running around for the last three days and got up way too early the past two days. Its not that I just need sleep. I need rest as well. Getting up early in the morning is really hard on me.
I can't stay up late so I don't try. But sometimes I just have to get out of bed too early.
My plan for the weekend: bed early, sleep late, repeat.
Wednesday, May 3, 2017
I Need A Nap
I am so tired these days. I haven't been getting enough sleep. I have been doing too much. Now that is not new but we did go away for the weekend and I have been busy all week with a bunch of things. These have involved getting up early in the morning which I am not good at any more.
This fatigue reminds me why I no longer am working and trying to get SS Disability for the past year. But all I know right now is I need a nap but I need to cook dinner and tomorrow I get to pick up my father at 7 am, meaning I have to leave here at 630 - not my favorite time of the day. I think I will take a nap when I get home.
Grrr....
This fatigue reminds me why I no longer am working and trying to get SS Disability for the past year. But all I know right now is I need a nap but I need to cook dinner and tomorrow I get to pick up my father at 7 am, meaning I have to leave here at 630 - not my favorite time of the day. I think I will take a nap when I get home.
Grrr....
Tuesday, May 2, 2017
Finding Good Medical Resources
This always amazes me. People get diagnosed with a medical ailment and then don't use the good medical resources available. If you need medical information, you need to do a little research to find the resources.
A good patient takes time to learn about any significant medical ailment so they better understand their health. If you are educated you will be less stressed and potentially handle your ailment better. You really do not want to just jump on the internet and google your ailment. That is the worst thing to do.
A good first step is to ask your doctor who diagnosed you on where you can get good information. Its their field of study so they will know where to find information. My doctor at my breast cancer diagnosis sent me to breastcancer.org, komen.org and the American Cancer Society (cancer.org). He said not to believe any information I found on line.
If you forgot to ask your doctor the question, you can start by finding where that type of medical specialty hang out on line. For example, at my rheumatoid arthritis diagnosis, I googled 'rheumatology doctor associations USA'. I ended up at the American College of Rheumatologists (ascr.us). They had a link to patient information on their front page. Then I found the American College of Rheumatology (rheumatology.org). Those two links found me lots of information that really helped me.
For any kind of cancer, I always start at the American Cancer Society (cancer.org) I do not consider any other site to provide information of any value on cancer, except for the American Cancer Institute and a few other government type sites.
Another place to start are accredited resources for general medical information. The one's I consider good are:
It always saddens me when I hear people quoting misinformation they found on line which is completely wrong or just incomplete. That does not help them at all. Take the time to learn about your health so you can be healthier and less stress.
A good patient takes time to learn about any significant medical ailment so they better understand their health. If you are educated you will be less stressed and potentially handle your ailment better. You really do not want to just jump on the internet and google your ailment. That is the worst thing to do.
A good first step is to ask your doctor who diagnosed you on where you can get good information. Its their field of study so they will know where to find information. My doctor at my breast cancer diagnosis sent me to breastcancer.org, komen.org and the American Cancer Society (cancer.org). He said not to believe any information I found on line.
If you forgot to ask your doctor the question, you can start by finding where that type of medical specialty hang out on line. For example, at my rheumatoid arthritis diagnosis, I googled 'rheumatology doctor associations USA'. I ended up at the American College of Rheumatologists (ascr.us). They had a link to patient information on their front page. Then I found the American College of Rheumatology (rheumatology.org). Those two links found me lots of information that really helped me.
For any kind of cancer, I always start at the American Cancer Society (cancer.org) I do not consider any other site to provide information of any value on cancer, except for the American Cancer Institute and a few other government type sites.
Another place to start are accredited resources for general medical information. The one's I consider good are:
- WebMD - webmd.com
- Mayo Clinic - mayoclinic.org
- The website for the hospital where I go - Lahey Medical Center - lahey.org.
It always saddens me when I hear people quoting misinformation they found on line which is completely wrong or just incomplete. That does not help them at all. Take the time to learn about your health so you can be healthier and less stress.
Monday, May 1, 2017
Taking A Break
It was our anniversary - marriage, not cancer - so we went away for a long weekend to the beach. In Maine. In April. It was 70 something degrees on Saturday - which is a heat wave there. (One of the weather people on TV said it took him a while to adjust to 80 degrees.) The hotel filled up overnight as a result. This is where we were:
We really needed a few days off to ourselves. Honestly I think its important to spend time together as a couple without distractions. For a good relationship, you need to work on it. You can't expect a happy relationship if you ignore it. We have another trip planned in about three months to keep spending time together.
What did we do? Walk on the beach every day. At least a couple of times, except for this morning when it was 43 degrees and the wind was blowing directly on shore from the 38 degree ocean water so it was freezing cold.
We also explored Portland Maine which is a nice city, ate out, played skee ball and air hockey in an arcade.
Basically I pretended I was a healthy person and enjoyed the outdoors. I may pay the price for this for a few days but I really needed to pretend I could be normal. But I also took a three hour nap the other day which helps me immensely.
We really needed a few days off to ourselves. Honestly I think its important to spend time together as a couple without distractions. For a good relationship, you need to work on it. You can't expect a happy relationship if you ignore it. We have another trip planned in about three months to keep spending time together.
What did we do? Walk on the beach every day. At least a couple of times, except for this morning when it was 43 degrees and the wind was blowing directly on shore from the 38 degree ocean water so it was freezing cold.
We also explored Portland Maine which is a nice city, ate out, played skee ball and air hockey in an arcade.
Basically I pretended I was a healthy person and enjoyed the outdoors. I may pay the price for this for a few days but I really needed to pretend I could be normal. But I also took a three hour nap the other day which helps me immensely.
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