I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.
Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...
When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.
The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.
With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.
I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob. Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.
Tuesday, 21 May 2013
Someone Took the Monster Out of the Cupboard
I have a monster in the cupboard. We don't need to look at him every day, so we keep him in the cupboard. My husband and I know he's there. We take him out from time to time, but not often; he's so scary. I thought my daughter knew he was there. She didn't. She didn't know we had a monster.
The monster is the fact that breast cancer kills.
My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her. It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.
Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.
To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.
My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.
I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.
Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?
The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.
You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.
The monster is the fact that breast cancer kills.
My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her. It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.
Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.
To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.
My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.
I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.
Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?
The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.
You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.
Wednesday, 24 April 2013
Call Me Mabel, Stable Mabel
This morning I saw my oncologist to get the results of the CT scan I had last Friday. Everything is stable! I will admit that I really liked the CTs I had during chemo that showed my liver tumours shrinking dramatically. OK, I wish I was NED (no evidence of disease). But I am happy to be sable, Stable Mabel.
This was my first CT scan since I began Tamoxifen treatment. I had thought of this drug only for its value in preventing the recurrence of breast cancer; I hadn't realized it was used for metastatic disease as well. I thought I was going to have to do chemo for the rest of my life. [Yes, there is SO much I don't know!] My bone marrow is glad for the chemo break, not that Tamoxifen is completely benign. I have had increased joint pain, significant nausea and, most recently, hot flashes. It's almost as bad as my chemo, Taxol. But it isn't as toxic. Knowing that my doctor has so many drugs to use against my cancer (triple positive ductal breast cancer) is comforting. In fact, the doctor mentioned that it appears that cancer cells are forgetful. They lose their resistance to particular chemo drugs after about a year. That allows the oncologists to retry a drug that stopped working. It gives me hope that I will be around for a while.
I swear, I cry almost as much after good news as bad. My Sweetheart and I admitted some of our fears to my oncologist. My doctor is, and always has been very optimistic about his ability to treat my cancer as a chronic condition, rather than a life-threatening one. The truth is that right now my cancer is not threatening my life. i really should relax a little. Both the doc and my Sweetie would like it if I stayed off the Internet and forgot about median survival rates. They have a good point, but it would be hard. I feel a great deal of comfort and support from the breast cancer blogging community. Plus, I want to use my blog to keep my loved ones up to date and to, I hope, be of comfort and support to others.
[My title was inspired by Jen at Learning to Live Lengendary and her post "Missing Mabel.")
This was my first CT scan since I began Tamoxifen treatment. I had thought of this drug only for its value in preventing the recurrence of breast cancer; I hadn't realized it was used for metastatic disease as well. I thought I was going to have to do chemo for the rest of my life. [Yes, there is SO much I don't know!] My bone marrow is glad for the chemo break, not that Tamoxifen is completely benign. I have had increased joint pain, significant nausea and, most recently, hot flashes. It's almost as bad as my chemo, Taxol. But it isn't as toxic. Knowing that my doctor has so many drugs to use against my cancer (triple positive ductal breast cancer) is comforting. In fact, the doctor mentioned that it appears that cancer cells are forgetful. They lose their resistance to particular chemo drugs after about a year. That allows the oncologists to retry a drug that stopped working. It gives me hope that I will be around for a while.
I swear, I cry almost as much after good news as bad. My Sweetheart and I admitted some of our fears to my oncologist. My doctor is, and always has been very optimistic about his ability to treat my cancer as a chronic condition, rather than a life-threatening one. The truth is that right now my cancer is not threatening my life. i really should relax a little. Both the doc and my Sweetie would like it if I stayed off the Internet and forgot about median survival rates. They have a good point, but it would be hard. I feel a great deal of comfort and support from the breast cancer blogging community. Plus, I want to use my blog to keep my loved ones up to date and to, I hope, be of comfort and support to others.
[My title was inspired by Jen at Learning to Live Lengendary and her post "Missing Mabel.")
Thursday, 4 April 2013
Reflections on Recent Deaths
I was shocked today to learn that Roger Ebert had passed away only days after announcing he was taking a "leave of presence" due to the return of his cancer. He had so many plans for this leave and now he is gone. Just weeks ago, Donna Peach, a breast cancer blogger, passed away after what seemed to be a recurrence of shingles. Through the Twitter feed I was informed today of another passing, this time of the mother of young children.
Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.
WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.
First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.
Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.
I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!
Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.
And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."
I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.
There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.
I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?
I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.
The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.
And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:
"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.
"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "
Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.
WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.
First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.
Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.
I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!
Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.
And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."
I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.
There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.
I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?
I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.
The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.
And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:
"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.
"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "
Sunday, 17 February 2013
An Ordinary Day
There was nothing but leftovers in the fridge, so we ordered the "Canadian" pizza (with pepperoni, bacon and mushrooms). We ate in front of the TV as we usually do on a pizza night. Plus, the hockey game was starting: Ottawa vs. Toronto. I had one eye on the iPad through the game, playing Hay Day and reading the Twitter feed. Unfortunately, the Sens lost. We hate to lose to Toronto, but so many of our top players are out with injuries that we really didn't expect much scoring. After the loss, we sent the Bean to bed. I should have gone up at the same time; instead, I promptly fell asleep while we watched "Monk" on DVD.
In the morning, I slept in. And then slept some more. The Bean and I had breakfast together and watched the Family Channel while my Sweetie was at the gym. Next thing, it was time to shower, while Sweetie sorted the dirty clothes. Sunday is laundry day at our house. After lunch, the Bean and I went to Loblaws for groceries. Tomorrow is Family Day and the grocery stores will be closed. Sweetie is making carrot ginger soup tonight. Mmm... I also got all we need to make Baked Pasta tomorrow. Despite Family Day, tomorrow night the Bean has her first tryout for competitive level soccer. We learned last summer that pasta and sauce is the fuel she needs to play her best soccer.
So I'm sitting on the couch with the iPad watching "Income Property" and thinking about my day. It's an ordinary day really. It all depends how you look at it. But this can be a day with Stage IV breast cancer.
In the morning, I slept in. And then slept some more. The Bean and I had breakfast together and watched the Family Channel while my Sweetie was at the gym. Next thing, it was time to shower, while Sweetie sorted the dirty clothes. Sunday is laundry day at our house. After lunch, the Bean and I went to Loblaws for groceries. Tomorrow is Family Day and the grocery stores will be closed. Sweetie is making carrot ginger soup tonight. Mmm... I also got all we need to make Baked Pasta tomorrow. Despite Family Day, tomorrow night the Bean has her first tryout for competitive level soccer. We learned last summer that pasta and sauce is the fuel she needs to play her best soccer.
So I'm sitting on the couch with the iPad watching "Income Property" and thinking about my day. It's an ordinary day really. It all depends how you look at it. But this can be a day with Stage IV breast cancer.
Thursday, 7 February 2013
We Can't Not Treat It
Yesterday, we saw Dr. M, my radiation oncologist. The first time we saw her, over a year ago, we were a little bowled over by her approach. Unlike most doctors we see, she took us on a journey through her thought process. She did the same thing yesterday, and I like it. I came out feeling like I understood exactly how and when I would be treated, why I would be treated and even what the risks of the treatment would be. Really, that shouldn't be too much to ask.
Having looked at the CT and X-rays as well as the orthopedist's report, Dr. M was clear that my hip needed to be treated. The problematic tumour is in the femoral neck, the thin part of the femur leading to the ball that fits into the hip joint. It is a vulnerable spot. I should get a call soon to go in for marking in the next 10 to 14 days. The marking (tattooing, actually) is done before the radiation to allow the beam to get the right spot each time. After that, I will get five sessions of radiation to the femoral neck as well as up towards the ball and down a bit into the femur. She informed me that after the radiation, the blood vessels in the area would dilate, which may put me at increased risk of fracture for a period of time. While this risk is known, there isn't sufficient research to determine how long the increased risk would last. Given my health (good compared to many cancer patients) and mobility, she estimated that within a month, my hip should be healed. We also talked about the possibility the orthopedist would recommend surgery, or a fracture would require surgery. She assured me that the radiation and resulting dilation would not have an impact on any subsequent surgery.
As you may know, typically with breast cancer, patients receive 20 to 30 sessions of radiation after surgery and chemo. Bone metastases are treated very differently. Dr. M does five to ten sessions on bone mets. As I understand it, they limit the number of sessions because the radiation can seriously affect patient's bone marrow. This isn't an issue when the breast is being radiated.
I am preparing myself for two side effects from the radiation. First, I am likely to experience some increase in bone pain in the days after the radiation sessions. That shouldn't last long. I may also get a "sunburn" from the radiation. I still have a darkened, dry area on my back from the radiation I had on my spine. This morning I started applying Dream Cream from Lush to my hip. Perhaps if I keep the area moisturized, it won't burn.
In the meantime, I'm to continue to be careful of the ice. And no jumping off buildings, Dr. M said. That's a shame. Tomorrow is Superhero Day at the Bean's school. I won't be able to join in.
Having looked at the CT and X-rays as well as the orthopedist's report, Dr. M was clear that my hip needed to be treated. The problematic tumour is in the femoral neck, the thin part of the femur leading to the ball that fits into the hip joint. It is a vulnerable spot. I should get a call soon to go in for marking in the next 10 to 14 days. The marking (tattooing, actually) is done before the radiation to allow the beam to get the right spot each time. After that, I will get five sessions of radiation to the femoral neck as well as up towards the ball and down a bit into the femur. She informed me that after the radiation, the blood vessels in the area would dilate, which may put me at increased risk of fracture for a period of time. While this risk is known, there isn't sufficient research to determine how long the increased risk would last. Given my health (good compared to many cancer patients) and mobility, she estimated that within a month, my hip should be healed. We also talked about the possibility the orthopedist would recommend surgery, or a fracture would require surgery. She assured me that the radiation and resulting dilation would not have an impact on any subsequent surgery.
As you may know, typically with breast cancer, patients receive 20 to 30 sessions of radiation after surgery and chemo. Bone metastases are treated very differently. Dr. M does five to ten sessions on bone mets. As I understand it, they limit the number of sessions because the radiation can seriously affect patient's bone marrow. This isn't an issue when the breast is being radiated.
I am preparing myself for two side effects from the radiation. First, I am likely to experience some increase in bone pain in the days after the radiation sessions. That shouldn't last long. I may also get a "sunburn" from the radiation. I still have a darkened, dry area on my back from the radiation I had on my spine. This morning I started applying Dream Cream from Lush to my hip. Perhaps if I keep the area moisturized, it won't burn.
In the meantime, I'm to continue to be careful of the ice. And no jumping off buildings, Dr. M said. That's a shame. Tomorrow is Superhero Day at the Bean's school. I won't be able to join in.
Thank You For Being There With Me
Over the last couple of days, I have read a couple of blog posts about Stage IV cancer patients feeling abandoned by their friends, colleagues and even family who "can't handle" their cancer diagnosis. One of my favourite bloggers, Ann at "Breast Cancer? But Doctor... I Hate Pink" shares her very personal story in her post Abandonment is not a form of love. I've read of women with Stage IV cancer even feeling snubbed within the breast cancer community, like we are the wicked stepsister in a pink fairy tale. If you have come to this blog looking for guidance on that sort of situation, I can't really help you, other than to recommend you click on the link to Ann's post.
I feel compelled to write about the level of support I have received because it has truly been incredible, unexpected... even overwhelming. Since I got sick, you have all been there for me:
Thank you.
I feel compelled to write about the level of support I have received because it has truly been incredible, unexpected... even overwhelming. Since I got sick, you have all been there for me:
- the Bertolo cousins who phone me to see how I'm doing;
- the teachers that filled our freezer to overflowing... twice;
- the neighbour who loaned my her wig;
- the second cousin I met online who emails to check on me if I haven't blogged in a couple of weeks;
- my boss and coworker who have tried to crochet me back to health;
- the coworkers that collected money to buy me a tablet to keep me connected at home;
- my high school buddies that came to Ottawa for my birthday;
- everyone who donated money to the Run for the Cure on behalf of me, Sweetie and the Bean;
- the neighbour who looks after the Bean when my chemo and doctors appointments run late;
- my brothers, who check up on me even though life has thrown then a lot of shit this past year;
- my aunties and uncles who call, email me about cancer-fighting foods, and have masses said for me;
- old friends sending me messages of support on Facebook;
- the Bean's friends' moms who have invited her for playdates and offerred to take her any time we're in a bind;
- neighbours and coworkers who gave us suppers and sweets last year when we were overwhelmed with all the appointments;
- friends that visited me in the hospital;
- friends that came to our house to make us pizza;
- friends that sat with me during chemo, even though the Benedryl threatened to put me to sleep;
- everyone who put up with incoherent emails and voicemails back when I was adjusting to the painkillers;
- my sweet girl, who cut her hair for cancer wigs, and makes her own breakfast;
- my Sweetheart, who does everything for me.
Thank you.
Subscribe to:
Posts (Atom)