How do you break scary news to your child? The answer is as unique as the individual who's struggling with the answer. I'm not an expert, but I am a mom, and I take my responsibility to protect my child extremely seriously.
Today I want to talk to you about how I chose to break the news of my medical treatment to my son. I'll also walk you through some of the things I think you should consider as you decide what's right for you and your family. Again - not from a place of educational expertise - but from my own experience.
First off, YOU decide what is right for your family. You and you alone. You'll hear this many times as you're going through treatment for DCIS, but almost everything about this is a highly personal decision dependent upon many unique factors. You get to decide what's right here too.
Here is what was right for me.
I told my 12-year-old son about my DCIS and treatment right before I went to the hospital for an overnight stay with my mastectomy. I made it through the initial scare, the mammogram, the doctor appointments, the lumpectomy surgery and the wait for the surgery date to roll around, before he even knew what was happening. I felt it was just too much for him to bear, for those first few months. I simply didn't want him to worry.
When I went in for the lumpectomy we were able to drop him off at school and go straight to the outpatient surgery center for my surgery. I told him I was going to the doctor. When he got home from school that day, I was at home sitting in the recliner - as I usually am - and he had no idea that I had surgery that day. I told him I didn't go to work that day. No big deal at all.
I dealt with some super heavy days before my son even knew what was going on. For me, it was important not to disrupt his routine or his feelings until I had the facts. I was worrying non-stop, and I didn't want to put that burden on my child. School was in session at the time, and I couldn't see any good reason to tell him right away. So, I waited.
I knew I'd have to have help from family members when I was at the hospital for my mastectomy, and so I knew it was the right time to talk with him about it. The conversation went extremely well. He was in his room and I talked with him. I told him that I had seen my doctor and had some tests done, and that my doctor had suggested surgery because some of my results showed that I needed it. He followed me, so far.
I asked him if he knew what cancer is, and he said he did. He had learned that it's when cells in our bodies are defective and grow into something bad. I asked him if he knew what the pink ribbons stood for related to cancer, and he did - breast cancer. I also asked him if he had ever had any friends whose moms had breast cancer before. Again, he did. We talked about them. I told him that is what I would be having surgery for, and that my doctors were going to take care of me. We talked a little about the surgery and how I'd be spending one night in the hospital to make sure I was OK after the surgery. He was totally fine with the plan of staying with a family member. He did ask if he could go to the surgery too instead of school, and I told him that I was only allowed to bring one adult to drive me home, and that I didn't want him to miss school. He was OK with it after we talked it through. I could tell he was worried about me, but the words I used weren't too scary or overwhelming. And I truly felt confident that my decisions and my doctors' recommendations were the right steps for me. I also told him that I'd be staying home from work for a few weeks after my surgery to recover. Some of my recovery was during the summer and he was glad that I would be home.
My son came to visit me in the hospital the next day after my surgery. He brought me a teddy bear, a balloon and red roses. I was so happy when he walked in with those that day. I am sure I looked a bit scary with a hospital gown, drain tubes, pain pumps and IV. I didn't show him the bandages or anything like that, but I did show him the binder I was wearing. He was curious about it all, but he didn't seem to be freaked out. I put on my best face and attitude while he was there. And I told him I should be able to come home the next day. Luckily, I was able to.
He was very helpful throughout my recovery. Also quite protective and wanted to know when I'd be seeing the doctors. I had two follow-up surgeries after my mastectomy, and I told him about those. I tried to use what I was going through as educational opportunities. Doctors help us. I counted my needle sticks throughout - I think I was at 17 when it came time for his next round of immunizations - and I told him what I did when I'd get an IV or injection of saline. It was good to relate my experience to his.
I'm really pleased with the way we discussed things at my house. I know that this isn't a one-size-fits-all approach, but I hope my experience can help guide you as you figure out what is right for you. :)
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Thursday, February 11, 2016
How do I tell my children?
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Friday, August 7, 2015
The Truth
So, the truth one week post-op is, I hate my boobs. I'm soooo trying to keep an open mind about this, but I'm bummed out. They aren't the shapes I had hoped for. They are smaller than I expected. And the right side - the side that did NOT have cancer - has a weird dent in it parallel to my incision. At my pre-op appointment the nurse warned me to remember that they are "sisters" not "twins," and I get that, I really do. But man, this sucks. I know things have to settle and swelling has to subside (which will make things SMALLER?!) And I know my surgeon has told me I might want a revision to address symmetry down the road (yeah, ANOTHER surgery), but today I just want you to know how I'm feeling about it, in case you feel the same way too. This whole process sucks. There's no way around it. And I am sad.
I've been stressed out about weight loss too, with a new passion around that. I'm trying to find enough willpower to overcome my stress-eating ways. After being told that I can't for so long, I am truly ready to start moving and finding activity and exercise that I enjoy. Stuff that won't feel like punishment or work. I've got to refine my diet and improve my nutrition.
I'm questioning what caused this in my body. What am I doing that made my body welcome these icky cells, and can I change it? Do I have the willpower to change it?
Ok. Rant over. Again, I count my lucky stars every single day because my worries are nothing compared with many who have fought and are fighting cancer. I'm lucky. These worries are nothing compared to some, and I'm truly blessed. But I just wanted you to know that it's OK to feel crummy about your outcome. Not everyone will look as perfect as some of the reconstructed breast images you'll see online. Only time will tell if I can get used to the new way that I look.
Ok. Rant over. Again, I count my lucky stars every single day because my worries are nothing compared with many who have fought and are fighting cancer. I'm lucky. These worries are nothing compared to some, and I'm truly blessed. But I just wanted you to know that it's OK to feel crummy about your outcome. Not everyone will look as perfect as some of the reconstructed breast images you'll see online. Only time will tell if I can get used to the new way that I look.
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Friday, July 31, 2015
Selecting Treatment for DCIS
Every cancer diagnosis is unique and dependent on many individual factors. It is full of individual characteristics and variables. Once you begin your journey, it's unlikely that your diagnosis will be identical to another person's.
I'm not a medical professional. I've never been through this before, and everything I share is based on my own personal experiences guided by a medical team that I trust. Just like the diagnosis is unique, the course of treatment is also unique. I encourage you to research everything recommended to you by your medical team. It will be based on your complete medical picture. What's right for me, might not be right for you. I can't tell you what's right for you, but I will share with you some of the information that I used to make my decision and some of the facts that I researched. I feel extremely lucky and blessed that with my diagnosis there were choices. I'm saddened that many cancer patients aren't offered any choices.
My diagnosis was Ductal Carcinoma In Situ (DCIS). That is considered to be Stage 0 breast cancer, and is non-invasive. Before I had my diagnosis, I chose to do a surgical biopsy of the tumor - or lumpectomy - where the entire tumor was removed for biopsy. When my diagnosis came back as DCIS, I had a choice of following up with a second surgery to remove more tissue that would ensure all of the cancerous tissue was removed followed by radiation treatments, or to do a mastectomy that would not require radiation or any further treatments. I chose to have skin-sparing bilateral mastectomy with immediate reconstruction that would be completed in phases. My surgeon also recommended a sentinel lymph node biopsy to try to ensure that no cancer cells had spread to my lymph nodes. I chose to do that as well.
Why did I choose mastectomy? It's a major surgery - my first in fact. Because I chose mastectomy, my treatment did not include radiation or drug therapy. (Chemotherapy is not usually associated with this diagnosis, so none of that either.) I believe that I have reduced my chances of recurrence as much as I possibly could have. There are certainly no guarantees, but I sleep better knowing that I don't have to go through this testing and these surgeries to follow up on a lump in my other breast years down the road. When I met with a radiation oncologist he told me that either way I went, I couldn't make a wrong decision. But he also told me that if I had another lump in the future, that my medical team would likely recommend mastectomy at that point. That would mean going through every single step that I've been through all over again. Finding the lump. Worrying. Mammogram. Ultrasound. Biopsy. Waiting for results. MRI. And then - surgery again. Likely a mastectomy.
I'm a worrier. If I had chosen lumpectomy and still had breasts, I would be constantly scared that I'd find another lump. I'd be counting down the days and hours until my next mammogram, and I would be living in fear. I'd lose sleep over it. Some women know that they will have body image concerns, but I honestly am not one of them. I don't care at all about losing my breasts and having scars. My fiancé also doesn't care. I don't feel like less of a woman at all. I don't plan to have any additional children in the future or breastfeed again. And I don't have a need for functioning breasts. I'm totally comfortable with the idea of having reconstructed breasts.
The language of cancer is foreign to someone who hasn't been exposed to the terminology before. I had never heard of DCIS before my diagnosis. I knew about stages of cancer, and that women that I have known have gone through the journey before me, but I didn't have to memorize the terminology. Here's a rundown on my diagnosis, if you're uncertain about the terminology and would like to learn a bit more.
Ductal Carcinoma In Situ (DCIS) is a noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, DCIS may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive.
DCIS is classified as Stage 0. The breast cancer stage is based on the results of testing that is done on the tumor and lymph nodes removed during surgery and other tests.
Most patients with breast cancer have surgery to remove the cancer from the breast. Some of the lymph nodes under the arm are usually taken out and reviewed to see if they contain cancer cells. A sentinel lymph node biopsy is the removal during surgery of the sentinel lymph node - the first lymph node to receive lymphatic drainage from a tumor. It is the first lymph node the cancer is likely to spread to from the tumor. A radioactive substance and/or blue dye is injected near the tumor. The substance flows through the lymph ducts to the lymph nodes. The first lymph node to receive the substance or dye is removed. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are not found, it may not be necessary to remove more lymph nodes.
The standard recommended courses of treatment for DCIS may include:
I researched and considered alternative treatments as part of my plan as well. Each patient is entitled to be their own advocate and ultimately be in charge of every step that you take. I'm learning about, and taking steps to improve my nutrition every single day. I also believe that increased activity will benefit me. I believe that everyone can benefit from that no matter what.
I used Navigating Cancer and Blood Disorders, a web site founded and developed by accomplished professionals from the healthcare and technology worlds, as my primary source for describing DCIS and treatment options in this blog. This web site was provided to me by my oncologist, and is one that I trust. I encourage you to use sources provided to you by your medical team as well. There are tons of sites out there, but please spend most of your time at the ones your medical team refers you to.
I'm not a medical professional. I've never been through this before, and everything I share is based on my own personal experiences guided by a medical team that I trust. Just like the diagnosis is unique, the course of treatment is also unique. I encourage you to research everything recommended to you by your medical team. It will be based on your complete medical picture. What's right for me, might not be right for you. I can't tell you what's right for you, but I will share with you some of the information that I used to make my decision and some of the facts that I researched. I feel extremely lucky and blessed that with my diagnosis there were choices. I'm saddened that many cancer patients aren't offered any choices.
My diagnosis was Ductal Carcinoma In Situ (DCIS). That is considered to be Stage 0 breast cancer, and is non-invasive. Before I had my diagnosis, I chose to do a surgical biopsy of the tumor - or lumpectomy - where the entire tumor was removed for biopsy. When my diagnosis came back as DCIS, I had a choice of following up with a second surgery to remove more tissue that would ensure all of the cancerous tissue was removed followed by radiation treatments, or to do a mastectomy that would not require radiation or any further treatments. I chose to have skin-sparing bilateral mastectomy with immediate reconstruction that would be completed in phases. My surgeon also recommended a sentinel lymph node biopsy to try to ensure that no cancer cells had spread to my lymph nodes. I chose to do that as well.
Why did I choose mastectomy? It's a major surgery - my first in fact. Because I chose mastectomy, my treatment did not include radiation or drug therapy. (Chemotherapy is not usually associated with this diagnosis, so none of that either.) I believe that I have reduced my chances of recurrence as much as I possibly could have. There are certainly no guarantees, but I sleep better knowing that I don't have to go through this testing and these surgeries to follow up on a lump in my other breast years down the road. When I met with a radiation oncologist he told me that either way I went, I couldn't make a wrong decision. But he also told me that if I had another lump in the future, that my medical team would likely recommend mastectomy at that point. That would mean going through every single step that I've been through all over again. Finding the lump. Worrying. Mammogram. Ultrasound. Biopsy. Waiting for results. MRI. And then - surgery again. Likely a mastectomy.
I'm a worrier. If I had chosen lumpectomy and still had breasts, I would be constantly scared that I'd find another lump. I'd be counting down the days and hours until my next mammogram, and I would be living in fear. I'd lose sleep over it. Some women know that they will have body image concerns, but I honestly am not one of them. I don't care at all about losing my breasts and having scars. My fiancé also doesn't care. I don't feel like less of a woman at all. I don't plan to have any additional children in the future or breastfeed again. And I don't have a need for functioning breasts. I'm totally comfortable with the idea of having reconstructed breasts.
The language of cancer is foreign to someone who hasn't been exposed to the terminology before. I had never heard of DCIS before my diagnosis. I knew about stages of cancer, and that women that I have known have gone through the journey before me, but I didn't have to memorize the terminology. Here's a rundown on my diagnosis, if you're uncertain about the terminology and would like to learn a bit more.
Ductal Carcinoma In Situ (DCIS) is a noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, DCIS may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive.
DCIS is classified as Stage 0. The breast cancer stage is based on the results of testing that is done on the tumor and lymph nodes removed during surgery and other tests.
Most patients with breast cancer have surgery to remove the cancer from the breast. Some of the lymph nodes under the arm are usually taken out and reviewed to see if they contain cancer cells. A sentinel lymph node biopsy is the removal during surgery of the sentinel lymph node - the first lymph node to receive lymphatic drainage from a tumor. It is the first lymph node the cancer is likely to spread to from the tumor. A radioactive substance and/or blue dye is injected near the tumor. The substance flows through the lymph ducts to the lymph nodes. The first lymph node to receive the substance or dye is removed. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are not found, it may not be necessary to remove more lymph nodes.
The standard recommended courses of treatment for DCIS may include:
- Breast-conserving surgery (like lumpectomy, which removes the tumor and a small amount of normal tissue around it) and radiation therapy with or without tamoxifen
- Total mastectomy (surgery to remove the whole breast that has cancer; some of the lymph nodes under the arm may be removed for biopsy at the same time as the breast surgery or after) with our without tamoxifen. In a bilateral mastectomy, both breasts are removed. If a patient chooses mastectomy, breast reconstruction (surgery to rebuild a breast's shape after a mastectomy) may be chosen. Breast reconstruction may be done at the time of the mastectomy or at a future time. The reconstructed breast may be made with the patient's own (non-breast) tissue or by using implants filled with silicone gel or saline.
- Breast-conserving surgery without radiation
I researched and considered alternative treatments as part of my plan as well. Each patient is entitled to be their own advocate and ultimately be in charge of every step that you take. I'm learning about, and taking steps to improve my nutrition every single day. I also believe that increased activity will benefit me. I believe that everyone can benefit from that no matter what.
I used Navigating Cancer and Blood Disorders, a web site founded and developed by accomplished professionals from the healthcare and technology worlds, as my primary source for describing DCIS and treatment options in this blog. This web site was provided to me by my oncologist, and is one that I trust. I encourage you to use sources provided to you by your medical team as well. There are tons of sites out there, but please spend most of your time at the ones your medical team refers you to.
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Wednesday, July 22, 2015
What is a Mammogram like?
I never spent much time worrying about what a mammogram would be like. I just accepted it as a normal screening that I'd do when my insurance company started to cover it. (Under my plan it's covered at age 40 for women who aren't at high risk.) After my diagnosis, I mentioned to my surgeon that I had started advocating for early mammograms, and he told me that sometimes people who personally know someone who has had a cancer diagnosis become MORE HESITANT to be screened. I hadn't really considered that everyone would look at this differently. It's always challenging to see things through someone else's perspective. So if you haven't had a mammogram screening before, I wanted to tell you what it's like. I'm not a medical professional - just someone who has had to learn about it quickly, as a patient.
I'm absolutely NOT afraid of doctors. I view them as vital. If something is going wrong with me, I want to know as soon as possible so that I can start to fix it. I do annual exams with my gynecologist. I'm not at all afraid of it. I always chalk that up to having a child - once you've been through that experience, modesty goes out the door, and nothing seems awkward or painful at all about an annual exam. I had planned to be just as diligent about mammograms too. I've followed along several breast cancer journeys, and I knew the risks.
Check Yourself Monthly
I always did self exams of my breasts in the shower. They always felt "lumpy" to me, so I wasn't sure I would know what I was looking for if I found something iffy. My doctor always does an exam of my breasts annually as well, and I'd always feel the same way that she does - circular motions, kneading dough motions, etc. I just wasn't sure what I was looking for - until, that is, I found it. In the shower, I noticed what I can only describe as a grape under my skin. I don't know the exact date that I found it, but I did. And, I couldn't stop thinking about it. I knew that I should have it checked out. How did I know?
1. It was new. It had developed and wasn't there before.
2. It was different. It was unlike any other area or bump or inconsistency I had ever felt before. Everything else within my breasts felt similar. If I felt a bumpy area, it was very similar to all the other bumpy areas.
3. It didn't go away. Breasts can change with our normal female cycles throughout the month. Sometimes breasts are tender and sore, and other times everything feels just fine. This place was always there; after I noticed it - it never went away.
Now, there are many things to look for with breast changes. Sometimes it's an indentation in the breast or an inversion. It could feel harder, feel like a lump, look like a dimple, etc. I found one illustration that shows 12 different signs of breast cancer that you should be looking for. But to best summarize it: you're looking for something that is DIFFERENT than before. Become familiar with how your breasts feel, and look for anything that is a change. Talk to your doctor if you have any questions, or if you notice anything. Don't be afraid. The sooner you find it, the better your outcome could be.
I've also learned that sometimes these things can't be detected by touch. Sometimes they are there, they are small, and they are bad news. That's why I can't imagine NOT wanting to be screened. If something nasty and deadly is lurking, I want to eradicate it. I hope you won't be afraid either.
After I found the lump and talked to my doctor, she set up a mammogram for me. The appointment was excrutiatingly FAR away from the date that I scheduled it. So I kept calling back to see if there were any cancellations. I finally got lucky, and got one - and got in 5 days sooner. That was important to me. By the time my original appointment rolled around, I already had the cancerous growth out of my body. Be your own advocate. Don't hesitate. Don't be afraid or timid.
I walked into my mammogram knowing that I had this lump that needed to be checked out, so I had a diagnostic mammogram. The technician took many images of the one spot in questions, from different angles, because we knew the spot was there. I wasn't intimidated at all. I wanted those images, and I wanted to deal with whatever it was. Was it uncomfortable? Yes. A little. Was it weird to have my breasts tightly pressed between plastic for photos of them? Yes. It was. But I simply did not care, because I had to know what I was dealing with. The technician told me to let her know if she was pressing too tightly on my breasts. I let her clamp it down as much as she wanted to, because I wanted the best possible images. I wouldn't describe it as painful, just really uncomfortable. But it was only until she could get the image, and then it was released.
I wore a shirt-like gown in place of my shirt. I removed it for the images. The nurse placed stickers on my nipples and on any place on my skin that was raised, so that it would be noted on the images. She also put stickers near the questionable area, since we knew about it. Then she walked me through each step. She told me where to stand and where to put my hands. She positioned my body into the machine and then told me to let her know if it was too much pressure. It wasn't for me. She took many images, and in 15 minutes or so, it was over. She told me she'd take the images to the radiologist to review and they'd let me know if I needed to do anything else.
So I waited in my gown-like shirt.
They did ultrasound images next. A new technician came to get me and we did that. It was very much like the procedure when you are looking for a baby, and I have been through that before, so this was easy. The technician used the cold gel on my breast, and took several images. When she was done, she told me either she, or the radiologist would talk with me about the findings. After several minutes she came back in and told me the radiologist would talk with me, and that I could get my shirt back on. I walked into the area where the radiologist sits to review images on a screen. It was dark back there, and there were several nurses lined up to talk with him. When it was my turn, he showed me the tumor. He explained to me that it wasn't fluid-filled, and that it had a blood supply. Ick! I saw both the mammogram images and the ultrasound ones. He recommended a biopsy as a next step, but the nurse said she'd also set me up for a consult with a surgeon. I wasn't sure why, but I went with it.
I met my surgeon the next day, and he set me up for surgery - a lumpectomy - the very next day after that. He explained to me my options regarding a needle biopsy or a lumpectomy. Getting rid of the thing sounded preferable to me from the very beginning. He told me I wouldn't have to feel it, or explain it to a doctor in every mammogram for the rest of my life if we just got rid of it, and that we wouldn't be messing around if it turned out to be something nasty. I'm very thankful that I listened to my gut on that one. And, I was super grateful that my surgeon's schedule was able to match my sense of urgency. I thought it would take days or weeks to be scheduled. When he said he could do it the next day, I breathed a sigh of relief.
I'm super grateful for my mammogram. It was able to rule out that I wasn't dealing with a cyst, and that it was something more serious that should be tested. I can't imagine my life if I had ignored it. I'm 36. What if I had waited four more years until I turn 40 to have a mammogram? I don't want to think about what could have happened if I had left it there for four more years!
I know that many things related to the medical world are scary and uncomfortable. Needles. Blood. Undressing. It sucks. But you know what sucks more? Not having a choice about your treatment plan because too much time has passed. I can deal with anything you throw at me, if it means that I can be healthy and alive longer.
If you have any questions about my experience, don't hesitate to ask! I'm literally an open book about this. :)
I'm absolutely NOT afraid of doctors. I view them as vital. If something is going wrong with me, I want to know as soon as possible so that I can start to fix it. I do annual exams with my gynecologist. I'm not at all afraid of it. I always chalk that up to having a child - once you've been through that experience, modesty goes out the door, and nothing seems awkward or painful at all about an annual exam. I had planned to be just as diligent about mammograms too. I've followed along several breast cancer journeys, and I knew the risks.
Check Yourself Monthly
I always did self exams of my breasts in the shower. They always felt "lumpy" to me, so I wasn't sure I would know what I was looking for if I found something iffy. My doctor always does an exam of my breasts annually as well, and I'd always feel the same way that she does - circular motions, kneading dough motions, etc. I just wasn't sure what I was looking for - until, that is, I found it. In the shower, I noticed what I can only describe as a grape under my skin. I don't know the exact date that I found it, but I did. And, I couldn't stop thinking about it. I knew that I should have it checked out. How did I know?
1. It was new. It had developed and wasn't there before.
2. It was different. It was unlike any other area or bump or inconsistency I had ever felt before. Everything else within my breasts felt similar. If I felt a bumpy area, it was very similar to all the other bumpy areas.
3. It didn't go away. Breasts can change with our normal female cycles throughout the month. Sometimes breasts are tender and sore, and other times everything feels just fine. This place was always there; after I noticed it - it never went away.
Now, there are many things to look for with breast changes. Sometimes it's an indentation in the breast or an inversion. It could feel harder, feel like a lump, look like a dimple, etc. I found one illustration that shows 12 different signs of breast cancer that you should be looking for. But to best summarize it: you're looking for something that is DIFFERENT than before. Become familiar with how your breasts feel, and look for anything that is a change. Talk to your doctor if you have any questions, or if you notice anything. Don't be afraid. The sooner you find it, the better your outcome could be.
I've also learned that sometimes these things can't be detected by touch. Sometimes they are there, they are small, and they are bad news. That's why I can't imagine NOT wanting to be screened. If something nasty and deadly is lurking, I want to eradicate it. I hope you won't be afraid either.
After I found the lump and talked to my doctor, she set up a mammogram for me. The appointment was excrutiatingly FAR away from the date that I scheduled it. So I kept calling back to see if there were any cancellations. I finally got lucky, and got one - and got in 5 days sooner. That was important to me. By the time my original appointment rolled around, I already had the cancerous growth out of my body. Be your own advocate. Don't hesitate. Don't be afraid or timid.
I walked into my mammogram knowing that I had this lump that needed to be checked out, so I had a diagnostic mammogram. The technician took many images of the one spot in questions, from different angles, because we knew the spot was there. I wasn't intimidated at all. I wanted those images, and I wanted to deal with whatever it was. Was it uncomfortable? Yes. A little. Was it weird to have my breasts tightly pressed between plastic for photos of them? Yes. It was. But I simply did not care, because I had to know what I was dealing with. The technician told me to let her know if she was pressing too tightly on my breasts. I let her clamp it down as much as she wanted to, because I wanted the best possible images. I wouldn't describe it as painful, just really uncomfortable. But it was only until she could get the image, and then it was released.
I wore a shirt-like gown in place of my shirt. I removed it for the images. The nurse placed stickers on my nipples and on any place on my skin that was raised, so that it would be noted on the images. She also put stickers near the questionable area, since we knew about it. Then she walked me through each step. She told me where to stand and where to put my hands. She positioned my body into the machine and then told me to let her know if it was too much pressure. It wasn't for me. She took many images, and in 15 minutes or so, it was over. She told me she'd take the images to the radiologist to review and they'd let me know if I needed to do anything else.
So I waited in my gown-like shirt.
They did ultrasound images next. A new technician came to get me and we did that. It was very much like the procedure when you are looking for a baby, and I have been through that before, so this was easy. The technician used the cold gel on my breast, and took several images. When she was done, she told me either she, or the radiologist would talk with me about the findings. After several minutes she came back in and told me the radiologist would talk with me, and that I could get my shirt back on. I walked into the area where the radiologist sits to review images on a screen. It was dark back there, and there were several nurses lined up to talk with him. When it was my turn, he showed me the tumor. He explained to me that it wasn't fluid-filled, and that it had a blood supply. Ick! I saw both the mammogram images and the ultrasound ones. He recommended a biopsy as a next step, but the nurse said she'd also set me up for a consult with a surgeon. I wasn't sure why, but I went with it.
I met my surgeon the next day, and he set me up for surgery - a lumpectomy - the very next day after that. He explained to me my options regarding a needle biopsy or a lumpectomy. Getting rid of the thing sounded preferable to me from the very beginning. He told me I wouldn't have to feel it, or explain it to a doctor in every mammogram for the rest of my life if we just got rid of it, and that we wouldn't be messing around if it turned out to be something nasty. I'm very thankful that I listened to my gut on that one. And, I was super grateful that my surgeon's schedule was able to match my sense of urgency. I thought it would take days or weeks to be scheduled. When he said he could do it the next day, I breathed a sigh of relief.
I'm super grateful for my mammogram. It was able to rule out that I wasn't dealing with a cyst, and that it was something more serious that should be tested. I can't imagine my life if I had ignored it. I'm 36. What if I had waited four more years until I turn 40 to have a mammogram? I don't want to think about what could have happened if I had left it there for four more years!
I know that many things related to the medical world are scary and uncomfortable. Needles. Blood. Undressing. It sucks. But you know what sucks more? Not having a choice about your treatment plan because too much time has passed. I can deal with anything you throw at me, if it means that I can be healthy and alive longer.
If you have any questions about my experience, don't hesitate to ask! I'm literally an open book about this. :)
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Wednesday, July 8, 2015
Random Things I Did Not Expect
1) I no longer have nipples, but luckily (ugh) those stupid weird, random nipple hairs are still there, just living in a slightly new address. Thank goodness for that.
2) Sneezing is extremely painful post op. I am squelching all sneezes indefinitely.
3) Hot showers are therapeutic. But not too hot due to all of the numb areas. Didn't expect to hold my hands over my chest to test water temp.
4) I am numb across my chest, under my arms and around the sides of my back. I noticed it when my fiancé was rubbing my back. Putting on deodorant - and shaving under my arms - feels really weird.
5) No BRAS! I remember how excited I was when I got on the school bus the first day of the new school year in like 5th grade and told my bus friend that I "had to" start wearing a (training) bra. I didn't expect that I would have that same ecstatic - but opposite - feeling at age 36. I don't have to wear a bra unless I just want to! Yippee!
6) It absolutely IS possible to sleep on my back with lots of pillows. In fact I can now go to sleep quite easily. I didn't expect that I'd ever be able to sleep on my back. I hated it before my surgeries. But, I haven't slept on my side or stomach since May 31.
7) I didn't expect to feel guilty about my diagnosis, but every time that I walk into the oncology center, I feel awful. I feel so guilty that I had options. I didn't have to go through chemotherapy or radiation treatments. I feel guilty sharing my story, because there are so many others who have had it so much worse.
8) I take people up on their offers to help me or bring me things. It's not a sign of weakness at all - it's letting others show you their love and helping you. Don't turn it down.
9) I didn't think that I would second guess everything I've ever done in an effort to try to prevent a recurrence. I didn't think I'd blame myself and start thinking through how I identify and eliminate all of the things that are potentially causing me (and my family) harm.
10) I didn't expect to feel blessed after going through this. I'm so lucky. I have been given a second chance. I saw my life flash before my eyes, and I imagined what it would be like if I couldn't experience all of the things that I want to experience. I am so lucky that I get to adjust my approach and live every moment to the fullest. Tomorrow is never promised, and I'll approach life that way. I didn't expect to feel so blessed.
8) I take people up on their offers to help me or bring me things. It's not a sign of weakness at all - it's letting others show you their love and helping you. Don't turn it down.
9) I didn't think that I would second guess everything I've ever done in an effort to try to prevent a recurrence. I didn't think I'd blame myself and start thinking through how I identify and eliminate all of the things that are potentially causing me (and my family) harm.
10) I didn't expect to feel blessed after going through this. I'm so lucky. I have been given a second chance. I saw my life flash before my eyes, and I imagined what it would be like if I couldn't experience all of the things that I want to experience. I am so lucky that I get to adjust my approach and live every moment to the fullest. Tomorrow is never promised, and I'll approach life that way. I didn't expect to feel so blessed.
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Sunday, June 7, 2015
My Bilateral Mastectomy - Not Sugar Coated!
On Monday, June 1, 2015, I went in to the hospital for my skin-sparing, bilateral mastectomy with immediate reconstruction. I also had a tracer injection a few hours before my surgery that would identify the lymph nodes that would need to be biopsied. The injection was done near my areola, and I had to massage the breast regularly to distribute the fluid before surgery.
Once I was settled into my pre-op room, there was a lot of waiting. I turned on the tiny tv to try to make time pass faster, but I watched nothing - it was just on. Each of my surgeons (general surgeon who would perform the mastectomy, and plastic surgeon who would place the tissue expanders for my reconstruction) and the anesthesiologist came in to talk with me before my surgery. The plastic surgeon marked on my chest and discussed what he'd be doing. And then finally, it was time to go back. Two nurses came to roll me back. I remember feeling sad, anxious, nervous, relieved and scared - all at once. I said "see ya soon" to Will, and the nurses pushed me back to the operating room. I remember the giant doors. The ride wasn't long, but my mind was racing. I'm certain my heart was pounding. I was trying to remain calm, but I was really nervous.
I remember there being several people in the operating room. I heard my surgeon's voice. Being a contact lens wearer, I couldn't see very clearly. I already had to hand my glasses over to the nurse. They asked me to move from the rolling bed that I was on, over onto the operating table. They told me where to place my arms. I remember being concerned about the IV getting hung up on something as I moved, but I got settled in. Once I was positioned there, I took a couple of deep breaths into the mask - as instructed - and it seemed like only moments later, and I was waking up in recovery.
When I woke up, I recognized one of the nurses from my lumpectomy surgery. I felt a little bit of pain. I remember them telling me that if I felt pain to ask for pain medicine, so I did. That turned out to me a mistake. This was my second time under anesthesia, and the first time I had zero problems. This time, I got sick. I don't know if it was from the pain medicine or the after effects of anesthesia. I stayed sick that entire day and into the next morning. The nurses switched me over to pain medicine taken in pill form. I tried to eat and drink water, or eat ice, but I couldn't keep anything down.
I stayed in the hospital until 4 p.m. the following day. I was in my room for around 24 hours. It seemed much longer to me. I tried to nap often, but that first night was hard. There are all sorts of beeps and alarms. When my IV fluid was empty, an alarm would sound, and I was the only one who would hear it. I'd wait for as long as I could stand it, and then I'd press my nurse alert button. I really hated bothering them, because I could tell that they were so very busy, and I didn't feel like my concerns were urgent. Every time I would stand up to go to the restroom I would need help because for some reason, I didn't yet have shoulder bags for my two On-Q pain pumps. They were giant balls - bigger than a softball - and they had to be held and carried each time I got up. And I had the IV stand to deal with too. On top of all of that, every time I would stand up, I would get sick. It was awful. I felt helpless and depressed on top of the pain and overall discomfort. I just wanted to go home, but I couldn't until I could keep food down, go to the restroom and manage my pain. I tried to time my requests to go to the restroom as far apart as I could stand. I'd note the time I got up and if I felt the need to go again, I actually rationalized in my head if it had been long enough since the last time I got up. I knew I'd throw up, and I knew I'd have to ask the nurses for help.
Will stayed with me all day long. I woke up after one of my naps - sometime around 10 or 11 p.m., and Will was still there in one of the super uncomfy chairs. I felt really bad. He told me he wasn't going to leave without me knowing it. I told him I was OK, and that he could go sleep in a comfy bed. He always gets up early, and I knew he'd be back very early. During the day my sister brought my son to see me. They brought me red roses, a teddy bear and a get well balloon. I was so happy to see them. I showed him my IV and all the things that were coming out of me. I also got a lovely flower arrangement from my team at work. I was grateful to have people thinking of me. Will was in charge of updating close family and friends that day, and I made it a priority to FaceTime with my mom. I knew she wanted to be there too, and I wanted her to "see" me. So we FaceTimed that afternoon when my pain medicine was at its best.
There were other unpleasantries during that 24 hours. My nurses would check on me and take vitals every 3-4 hours. I developed a low-grade fever overnight. One of my drains came apart and I got the fluid all over me. The nurses helped clean me up. I had to have blood drawn at what seemed like 4 a.m. I'm not sure what time it actually was, but it was before 7 a.m. - while Will was at home. I also had to do those breathing exercises to prevent pneumonia. Those lovely people came to have me do the breathing exercises 3 times while I was there.
The next morning my general surgeon came to check on me. He told me that in order to go home I had to be able to go to the bathroom; I had to have my pain managed; and I had to be able to keep food down. After that overnight stay, I was determined to meet those requirements. He also told me that getting up to move around would likely help get rid of that low-grade fever. I was really afraid I'd be sick if I moved, but I tried it. I was so relieved when I could move around without feeling sick. I eventually took a few laps up and down the hallway - with Will's help. We got to peek into the nursery (there weren't that many babies in there that day). It passed the time to get up and walk, so we walked 2 or 3 times.
My boss and a teammate from work came by to visit me. I was feeling so much better by then. And the nurses were discussing releasing me, so I was feeling good. While I had guests, the nurse came in to take my IV out! I was thrilled. I was going home! Will helped me pack everything up into the truck, and he was able to drive the truck to the patient pick up door. We got everything we needed, and instructions for taking care of my drains, and I got to take the wheelchair ride downstairs.
Getting into the truck, and going over all of the bumps of the road wasn't fun. But getting to sit in my own house, in our recliner, in front of our TV made it all worthwhile. I was finally home.
When I got home I looked like this. I had an elastic binder that used Velcro to close it. I also had four attachments - two On-Q pain pumps that were contained in black zippered bags, and two surgical drains - the nurse navigator gave me pink bags with ribbon straps to hold the drains in. The very tiny pain pump tubes are visible above my binder. The larger drain tubes were coming out of each of my sides.
Close up of the bags. The clear thin tubes belong to the pain pumps; the red larger tubes are my surgical drains doing their job.
The drains truly looked like grenades. I used a lanyard around my neck to hold them while I showered, and I alternated a few different ways to deal with them. I used the pink bags for a few days. I used my lanyard sometimes as well. And, I used giant safety pins to attach them to my binder or camisole. I had my drains for two weeks. We had to use two fingers to "strip" all of the fluid and tissue out of each tube, measure and record the output and time of measurements during that time. The amount of fluid decreased over time, and the color of the fluid gradually changed from red to reddish to pink to brownish yellow.
I had sutures holding each of my drain tubes in place. These things were sore, and were one of the worst parts of this whole ordeal. Each time I'd bump one, or adjust my posture in my recliner, it would hurt. I would finally get one side to stop hurting, then the other would start hurting more. I also had one incident where a tube got stuck on a kitchen drawer handle. Ouch. I was way more careful after that incident.
I got my appointment to return for my drain removal - Monday, June 15, 2015. If everything was going according to plan, this would also be my first saline fill into my tissue expanders.
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Monday, June 1, 2015
Mastectomy Day
IV is in place. They used lidocaine to numb my hand a bit before inserting it. It really helped (compared to surgery #1 for my lumpectomy.) Now we wait. I had a tracer injection to identify the lymph nodes that need to be removed/biopsied. It takes a couple of hours for that to be ready to go, so I'm here. Waiting anxiously.
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Saturday, May 30, 2015
Relaxation
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Nails Off!
It's Saturday, May 30, 2015. Time to get my acrylic nails and toenail polish removed before surgery. See us later, little guys. We'll meet again soon when I get a brand new, fresh set! Surgery is on Monday, June 1, 2015. Let's do this.
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Friday, May 22, 2015
Lumpectomy Progression
On April 29, 2015, I had my first surgery - an outpatient surgical biopsy of the lump that I found in my left breast. A lumpectomy. I took photos immediately after surgery (May 1, 2015), as my bruising progressed the following week (May 3, 2015), and then after my steri-strips were removed (May 8, 2015). My surgeon did a wonderful job with the incision. I hated to have to mess up his work! I'm fully convinced that I wouldn't even notice the scar if I still had it today.








