This is Ken posting for Irene.
Irene was up and walking (assisted) this afternoon after her three hour surgery.
Everyone said that it went well, nothing unexpected!
The kids and I are visiting her in the hospital right now - they are keeping her overnight to make sure everything is good. So we should be home tomorrow!
Irene will post details when she is up for it.
Friday, August 23, 2019
Thursday, August 22, 2019
8/22/19: Day Before Surgery
Well, tomorrow's the big day.
I know I complained about the surgery not being earlier, but I think the timing did end up working out well.
I'm so thankful that we were able to keep all our original summer plans. And the two weeks between our last family trip and tomorrow's surgery was just enough time to get everything done, including preparing and freezing a few meals, and school shopping for the kids (clothes, shoes, supplies, EpiPens/Auvi-Qs).
I also seemed to have a kind of nesting instinct, like I wanted to get the whole house in order before my surgery. It's like when we leave on vacation, I try to tidy up because it's so much nicer to come home to a clean house. I just wanted to get everything into a respectable shape beforehand, before I go "off duty".
The only thing that didn't get done at all is gardening, which I haven't tackled since before our trip to North Carolina in July. So our yard (except for the grass, which my husband mows) really is as unkept as it looks. Ha.
I'm feeling alright. It's a bit surreal, but I feel level-headed. Mostly, though, it's weird because I feel like the surgery itself is the Main Event, and then everything after that is still a big question mark, hidden behind a metaphorical curtain. I hope I will feel a sense of relief once the cancer is physically removed from my body. But will the surgeon be able to get all the cancer out? Has it spread? What will my pathology report say? Will I need chemotherapy or radiation? What about hormone therapy? How will my recovery go? What will my scars look like? How will I react to them?! What will it feel like to have no boobs?!?
Well, I'll let you all know how it goes. I've asked Ken to make a blog post after my surgery, to update all you faithful readers as soon as possible. Thank you so much to everyone who is taking the time to read my posts. It really means a lot to me.
I know I complained about the surgery not being earlier, but I think the timing did end up working out well.
I'm so thankful that we were able to keep all our original summer plans. And the two weeks between our last family trip and tomorrow's surgery was just enough time to get everything done, including preparing and freezing a few meals, and school shopping for the kids (clothes, shoes, supplies, EpiPens/Auvi-Qs).
I also seemed to have a kind of nesting instinct, like I wanted to get the whole house in order before my surgery. It's like when we leave on vacation, I try to tidy up because it's so much nicer to come home to a clean house. I just wanted to get everything into a respectable shape beforehand, before I go "off duty".
The only thing that didn't get done at all is gardening, which I haven't tackled since before our trip to North Carolina in July. So our yard (except for the grass, which my husband mows) really is as unkept as it looks. Ha.
I'm feeling alright. It's a bit surreal, but I feel level-headed. Mostly, though, it's weird because I feel like the surgery itself is the Main Event, and then everything after that is still a big question mark, hidden behind a metaphorical curtain. I hope I will feel a sense of relief once the cancer is physically removed from my body. But will the surgeon be able to get all the cancer out? Has it spread? What will my pathology report say? Will I need chemotherapy or radiation? What about hormone therapy? How will my recovery go? What will my scars look like? How will I react to them?! What will it feel like to have no boobs?!?
Well, I'll let you all know how it goes. I've asked Ken to make a blog post after my surgery, to update all you faithful readers as soon as possible. Thank you so much to everyone who is taking the time to read my posts. It really means a lot to me.
Wednesday, August 21, 2019
(Book Review) The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee
After I was diagnosed, I felt an odd compulsion to read this book, which had sat unread on our bookshelf for years. I think I saw it as a kind of opposition research.
Anyway, it was worth the read. I gave it 5 stars on Goodreads and posted the following review.
This book is impressively approachable. I found the author's writing exceptionally concise and engaging, though admittedly I got a bit muddled in trying to understand the DNA research towards the end.
It's a sweeping account chronicling everything related to cancer from causes and prevention to detection and treatment, from laboratory scientists making discoveries to physician researchers running clinical trials to the individual patients facing down cancer with bravery and dignity.
As the author lays out the history of cancer, there are incredible stories of pathologists and chemists and physician-scientists whose individual contributions came together over many decades to eventually result in the discovery of a new cancer or a new chemical to treat cancer. It was nothing short of fascinating to follow the history of chemotherapy through textile dyes and mustard gas. Ideas changed and developed and were tied back to concepts first proposed centuries earlier.
Much of the history of cancer research has taken place in Boston, and growing up in this area, it was particularly enlightening for me to learn about the stories behind well-known institutions and individuals like the Dana-Farber Cancer Institute, the Jimmy Fund, and Vannevar Bush. (As a student at MIT, I walked by a room named for him almost every day, and attended events in the room, but never had any idea who he was.) I even learned that a nearby town, Framingham, is the site of a massive epidemiological study that has led to a number of medical findings.
Remarkably - and this is altogether beside the point of the book - I could not help but take note, especially in today's political climate, how a great many of the researchers in the U.S. who made strides in the fight against cancer were immigrants or from immigrant families. I also saw parallels between the tobacco industry's refusal to acknowledge the dangers of cigarette smoking and the present-day gun industry's refusal to acknowledge the dangers of gun violence. If Big Tobacco, "an industry once thought virtually impregnable," (p. 267) could eventually be well-regulated, then maybe there is hope that the gun industry could one day be well-regulated, too.
On a personal note, this book was a gift to my husband (a teacher) from a student who wanted to share the book that had an outsized impact on him, inspiring him to want to become a doctor. The book sat on our shelf for years, and I didn't pick it up until I was diagnosed with breast cancer myself. Suddenly, I felt drawn to the book, and reading it felt like a kind of opposition research. While the book discusses many different cancers from leukemia to breast cancer to prostate cancer, a good portion of the history of cancer centers on breast cancer. I repeatedly felt that much of the information was directly relevant to me. I certainly now have a better understanding of how surgery, radiation, chemotherapy, and hormone therapy are all tools in an oncologist's toolbox, but figuring out which tool will work, and how exactly to use it, is highly dependent on the specific stage and type of cancer being treated.
What is clear from this book is that I am thankful for - indeed I feel deeply indebted to - every person ever drawn to study, treat, and attempt to cure cancer, every patient whose diagnosis, illness, treatment, and death helped to further the understanding of cancer and push the community towards a cure. Poignancy abounds in the history of cancer. Scientists who discovered the healing properties of radiation, only to succumb themselves to radiation-induced cancer. Patients who made up the statistics that drove the research towards a cure, but who were all individual persons with families and interests and full lives they weren't ready to leave.
It's been a very long, arduous, terrifying fight. The descriptions of the earliest mastectomies are horrifying, and I feel immensely grateful for being lucky enough to be diagnosed in 2019, when anesthesia, sterilization, and pain killers are customary parts of the procedure. Particularly astonishing to me was the realization that much of my treatment as a cancer patient is heavily reliant on discoveries and advances in cancer medicine that took place relatively recently, over the course of my own lifetime.
I would not go so far as to recommend this book to cancer patients. I might be a weirdo in the extent to which I am curious about what I am up against. But it's definitely a book worth reading for anyone who wants to know more about cancer, for whatever reason.
This book is impressively approachable. I found the author's writing exceptionally concise and engaging, though admittedly I got a bit muddled in trying to understand the DNA research towards the end.It's a sweeping account chronicling everything related to cancer from causes and prevention to detection and treatment, from laboratory scientists making discoveries to physician researchers running clinical trials to the individual patients facing down cancer with bravery and dignity.
As the author lays out the history of cancer, there are incredible stories of pathologists and chemists and physician-scientists whose individual contributions came together over many decades to eventually result in the discovery of a new cancer or a new chemical to treat cancer. It was nothing short of fascinating to follow the history of chemotherapy through textile dyes and mustard gas. Ideas changed and developed and were tied back to concepts first proposed centuries earlier.
Much of the history of cancer research has taken place in Boston, and growing up in this area, it was particularly enlightening for me to learn about the stories behind well-known institutions and individuals like the Dana-Farber Cancer Institute, the Jimmy Fund, and Vannevar Bush. (As a student at MIT, I walked by a room named for him almost every day, and attended events in the room, but never had any idea who he was.) I even learned that a nearby town, Framingham, is the site of a massive epidemiological study that has led to a number of medical findings.
Remarkably - and this is altogether beside the point of the book - I could not help but take note, especially in today's political climate, how a great many of the researchers in the U.S. who made strides in the fight against cancer were immigrants or from immigrant families. I also saw parallels between the tobacco industry's refusal to acknowledge the dangers of cigarette smoking and the present-day gun industry's refusal to acknowledge the dangers of gun violence. If Big Tobacco, "an industry once thought virtually impregnable," (p. 267) could eventually be well-regulated, then maybe there is hope that the gun industry could one day be well-regulated, too.
On a personal note, this book was a gift to my husband (a teacher) from a student who wanted to share the book that had an outsized impact on him, inspiring him to want to become a doctor. The book sat on our shelf for years, and I didn't pick it up until I was diagnosed with breast cancer myself. Suddenly, I felt drawn to the book, and reading it felt like a kind of opposition research. While the book discusses many different cancers from leukemia to breast cancer to prostate cancer, a good portion of the history of cancer centers on breast cancer. I repeatedly felt that much of the information was directly relevant to me. I certainly now have a better understanding of how surgery, radiation, chemotherapy, and hormone therapy are all tools in an oncologist's toolbox, but figuring out which tool will work, and how exactly to use it, is highly dependent on the specific stage and type of cancer being treated.
What is clear from this book is that I am thankful for - indeed I feel deeply indebted to - every person ever drawn to study, treat, and attempt to cure cancer, every patient whose diagnosis, illness, treatment, and death helped to further the understanding of cancer and push the community towards a cure. Poignancy abounds in the history of cancer. Scientists who discovered the healing properties of radiation, only to succumb themselves to radiation-induced cancer. Patients who made up the statistics that drove the research towards a cure, but who were all individual persons with families and interests and full lives they weren't ready to leave.
It's been a very long, arduous, terrifying fight. The descriptions of the earliest mastectomies are horrifying, and I feel immensely grateful for being lucky enough to be diagnosed in 2019, when anesthesia, sterilization, and pain killers are customary parts of the procedure. Particularly astonishing to me was the realization that much of my treatment as a cancer patient is heavily reliant on discoveries and advances in cancer medicine that took place relatively recently, over the course of my own lifetime.
I would not go so far as to recommend this book to cancer patients. I might be a weirdo in the extent to which I am curious about what I am up against. But it's definitely a book worth reading for anyone who wants to know more about cancer, for whatever reason.
Monday, August 19, 2019
8/19/19: Phone Call + Email
Hm. I know people are only human, and tasks can sometimes fall through the cracks. My surgery on Friday is like the Main Event for me, but of course I'm just one of many, many patients in the hospital.
I'm just trying to manage my anxiety. Right now it's not bad, and I'd like to keep it that way!
On the pre-operative phone call last week, the nurse said she would send me an email with complete instructions. I didn't get the email on Friday, so I called the hospital this morning. The nurse who answered the phone sent me the email immediately and had me confirm receipt while on the phone.
Interestingly, contrary to what the nurse said on the phone, the printed instructions clearly state, "Do not shave near where you will have surgery. Shaving with a razor can irritate your skin and make it easier to develop an infection."
The email also does not include full instructions for how to use Hibiclens. In fact, it says, "Hibiclens solution and instructions for how to use it will be given to you at your pre-admission visit." But I don't have a pre-admission appointment. So I found these instructions posted by the Memorial Sloan Kettering Cancer Center. And it sounds like I can buy it myself at a pharmacy.
Edited to add: I was able to buy Hibiclens at my local CVS. I don't have the receipt so I can't remember what I paid exactly, but CVS.com lists the price as $13.49.
Total cost to date: $18,100.71
With insurance, cost to me: $890.56
I'm just trying to manage my anxiety. Right now it's not bad, and I'd like to keep it that way!
On the pre-operative phone call last week, the nurse said she would send me an email with complete instructions. I didn't get the email on Friday, so I called the hospital this morning. The nurse who answered the phone sent me the email immediately and had me confirm receipt while on the phone.
Interestingly, contrary to what the nurse said on the phone, the printed instructions clearly state, "Do not shave near where you will have surgery. Shaving with a razor can irritate your skin and make it easier to develop an infection."
The email also does not include full instructions for how to use Hibiclens. In fact, it says, "Hibiclens solution and instructions for how to use it will be given to you at your pre-admission visit." But I don't have a pre-admission appointment. So I found these instructions posted by the Memorial Sloan Kettering Cancer Center. And it sounds like I can buy it myself at a pharmacy.
Edited to add: I was able to buy Hibiclens at my local CVS. I don't have the receipt so I can't remember what I paid exactly, but CVS.com lists the price as $13.49.
Total cost to date: $18,100.71
With insurance, cost to me: $890.56
Friday, August 16, 2019
8/16/19: Pre-Operative Phone Appointment
As instructed by the letter with surgery information, I called the hospital this morning for a pre-operative interview.
Mostly the nurse asked me a lot of questions related to my medical history.
She also gave me some pre-operative instructions, some of which were listed on the letter I already received, but some which weren't.
No eating or drinking anything, not even hard candy or water, after midnight the night before my surgery.
To get a jump on pain management, I should take two 500 mg Tylenol tablets before leaving the house on the morning of the surgery. It's okay to have a sip of water with those pills. I should not take Advil before or after the surgery. (Something about an increase risk of bleeding.)
I'm supposed to take a shower the night before and the morning of using a special antiseptic soap called Hibiclens. The letter I received hadn't mentioned showering at all. The nurse on the phone said she'd email me additional instructions including information about the special soap.
On one of the Facebook groups I joined, there was a whole thread about whether or not it's okay to shave before surgery. Some women are instructed not to shave for a number of days beforehand. I asked about this, and the nurse said it's okay to shave, just be careful not to nick myself, especially in the underarm area, which is close to the surgery site. Well, since shaving nicks are accidents, and I can't very well ensure that I won't nick myself unintentionally, I'm just going to err on the side of caution and not shave the week before, just in case.
It's a little hard to believe that one week from now, I will be in the operating room.
Mostly the nurse asked me a lot of questions related to my medical history.
She also gave me some pre-operative instructions, some of which were listed on the letter I already received, but some which weren't.
No eating or drinking anything, not even hard candy or water, after midnight the night before my surgery.
To get a jump on pain management, I should take two 500 mg Tylenol tablets before leaving the house on the morning of the surgery. It's okay to have a sip of water with those pills. I should not take Advil before or after the surgery. (Something about an increase risk of bleeding.)
I'm supposed to take a shower the night before and the morning of using a special antiseptic soap called Hibiclens. The letter I received hadn't mentioned showering at all. The nurse on the phone said she'd email me additional instructions including information about the special soap.
On one of the Facebook groups I joined, there was a whole thread about whether or not it's okay to shave before surgery. Some women are instructed not to shave for a number of days beforehand. I asked about this, and the nurse said it's okay to shave, just be careful not to nick myself, especially in the underarm area, which is close to the surgery site. Well, since shaving nicks are accidents, and I can't very well ensure that I won't nick myself unintentionally, I'm just going to err on the side of caution and not shave the week before, just in case.
It's a little hard to believe that one week from now, I will be in the operating room.
Thursday, August 15, 2019
8/15/19: I Got Billed for the Breast Surgeon Appointment
On July 1, our health insurance changed to a high deductible plan, so instead of paying co-pays, we basically pay everything out of pocket until we hit our deductible.
7/1/19: Breast Surgeon Appointment: $363.00
With insurance, I paid: $357.07
With insurance, I paid: $357.07
Total cost to date: $18,087.22
With insurance, cost to me: $877.07
Saturday, August 3, 2019
8/3/19: I Miss My Mom
My mom has Parkinson's Disease. It's late-stage, very advanced. She can't move or talk, and she's 100% dependent on assistance for everything. Thanks to my dad, she's very well taken care of. I visit them once or twice a week.
I do a lot of compartmentalizing. I am easily overwhelmed in general, so I try to keep each Big Life Concern in a separate mental box. My mom's Parkinson's Disease is separate from my kids' life-threatening food allergies, both of which are separate from my breast cancer.
But sometimes the integrity of those compartments weaken, and the situations get conflated.
If my mom were healthy herself, I know she'd come to help us through my post-surgery recovery. She'd make me yummy soups.
It's fine, though. We'll be okay. My dad is an amazing cook, and he'll set us up with plenty of food.
Also, my mother-in-law will be here for the first week after sugery, and she's sure to be a big help. Even though I'm the patient, I know I'm not the only person who needs support, and I'm glad my husband will have his mom here with him.
The other night, a friend and I went to see the movie The Farewell. This is how AMC Theatres describes it:
After learning their beloved matriarch has terminal lung cancer, a family opts not to tell her about the diagnosis, instead scheduling an impromptu wedding-reunion back in China. Headstrong and emotional writer Billi rebels against her parents' directive to stay in New York and joins the family as they awkwardly attempt to rekindle old bonds, throw together a wedding that only grandma is actually looking forward to, and surreptitiously say their goodbyes.
The Chinese-American main character, Billi, struggles with understanding how the family can keep such important news about her own health from her grandmother. I can't remember exact quotes, but one character says something like, sometimes the fear of cancer and dying is worse than the cancer itself. Another character tries to explain that in China, a person is not just an individual, they are a member of a family, and it's a kind of duty and honor to bear the burden of bad news for a loved one. (The movie explores the situation through the eyes of a Chinese-American, but it doesn't make a judgment of whether the decision is right or wrong.)
Anyway, the roles are kind of reversed for me and my mom, but I haven't talked to her about my diagnosis. It's not clear if she would even understand. When hospice care providers come to the house, they always remark on how comfortable my mom looks. So it's okay if my mom doesn't know, if her not knowing can allow her to feel more at peace.
I do a lot of compartmentalizing. I am easily overwhelmed in general, so I try to keep each Big Life Concern in a separate mental box. My mom's Parkinson's Disease is separate from my kids' life-threatening food allergies, both of which are separate from my breast cancer.
But sometimes the integrity of those compartments weaken, and the situations get conflated.
If my mom were healthy herself, I know she'd come to help us through my post-surgery recovery. She'd make me yummy soups.
It's fine, though. We'll be okay. My dad is an amazing cook, and he'll set us up with plenty of food.
Also, my mother-in-law will be here for the first week after sugery, and she's sure to be a big help. Even though I'm the patient, I know I'm not the only person who needs support, and I'm glad my husband will have his mom here with him.
The other night, a friend and I went to see the movie The Farewell. This is how AMC Theatres describes it:
After learning their beloved matriarch has terminal lung cancer, a family opts not to tell her about the diagnosis, instead scheduling an impromptu wedding-reunion back in China. Headstrong and emotional writer Billi rebels against her parents' directive to stay in New York and joins the family as they awkwardly attempt to rekindle old bonds, throw together a wedding that only grandma is actually looking forward to, and surreptitiously say their goodbyes.
The Chinese-American main character, Billi, struggles with understanding how the family can keep such important news about her own health from her grandmother. I can't remember exact quotes, but one character says something like, sometimes the fear of cancer and dying is worse than the cancer itself. Another character tries to explain that in China, a person is not just an individual, they are a member of a family, and it's a kind of duty and honor to bear the burden of bad news for a loved one. (The movie explores the situation through the eyes of a Chinese-American, but it doesn't make a judgment of whether the decision is right or wrong.)
Anyway, the roles are kind of reversed for me and my mom, but I haven't talked to her about my diagnosis. It's not clear if she would even understand. When hospice care providers come to the house, they always remark on how comfortable my mom looks. So it's okay if my mom doesn't know, if her not knowing can allow her to feel more at peace.
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