Hello! Let me crawl out of this little hole here for a second. It has been about three months since I last updated this blog. That has been for a reason: life has been freakin' hard. I decided (at the encouragement of others) to just focus on being well for a little while instead of worrying about keeping everybody in the loop. And to be honest, for a few months, blogging was the least of my concerns. But today, glorious today, I am feeling good and thought that I would take advantage of it to write a little about my experience.
There is no way to put into words what the experience of these past few months has been like. And it is daunting to think about summing them up. So I won't. Maybe time and space and healing will allow for me to write more fully about the experience. I pray it will because I believe that when we tell our stories they have the opportunity to give someone else strength or hope or freedom. I know that I often rely on the stories and experiences of other women to give me strength and guidance. So I hope to do that in small ways as well. Let's give it some time.
After my surgery in late August, and when we found out that the cancer was invasive in September, I retreated to my corner. No longer did I feel like the strong face of young women with breast cancer. I needed to retreat to my corner and let a handful of my people in my corner take care of me. And take care of me they did. I completed a very intense 4 rounds of chemo (AC) from mid-September to mid-Nobember. During those months I was usually in "survival mode," unable to think about anything beyond getting calories in my body and getting sleep for my body. Thankfully, I had my Handful to take care of me on a very basic level, even if they couldn't do much for me. They drove me to appointments, held my hand, made me meals, let me rest, and held me when I despaired. They reminded me over and over, "Katie, you can do this. We are here with you. Keep holding onto the rope. And when you feel like letting go, we will hold you onto the rope. God is good and God is love, even when it is too dark to see it." Thank you, Handful, for speaking those reminders to me with words and actions.
That is all that I will say about that at this point. There is much more to say, and maybe I will, in time. Currently, I am in the second phase of chemo and have weekly rounds of chemo until January 30th. This second drug compound (Taxol and Herceptin) that I am getting is much more tolerable. That is huge. Tolerable is the best thing since sliced bread. I have gone from feeling "horrible" to simply "bad." Yay! In all honesty, I could not be more grateful for that.
Thank you for the small ways that each of you support me. I continue to rely on my Handful for most support these days. But you can continue to pray for strength and peace as I go through this chemo treatment. On my good days, I am very aware of Strength and Peace in my life. On my bad days, I trust the people around me to believe it for me for a time.
May Peace be with you, as well.
Katie
Friday, December 12, 2014
Monday, September 15, 2014
PET Scan Results, Chemo Start Date, and Treatment Plans
Hey y'all,
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I'm just gonna come right out and say it: The PET scan was CLEAR!!!! My doctor actually called us that afternoon to give me the good news. You may be asking, "What does this mean?" Well, it means that, as far as they can tell, the cancer has not metastasized to any other organ. That is great news. So we feel like we know what we are dealing with and we will continue with the treatment that my oncologist has laid out for my breast cancer. We were SO relieved to hear this news. We were honestly preparing ourselves for the worst because we did not feel prepared when we found out the news last time that my cancer was invasive in the first place. But now we can just be thankful and our hearts can rest a little bit.
The other news is that I start chemo this Thursday, September 18th. More info below.
Below are some of the questions that people may be have...
Where will you get your treatment? We decided on the Cleveland Clinic. It is an amazing facility with amazing resources and it is only an hour and a half from where we live. We are so thankful that one of the top cancer treating facilities is so close to us. We believe that I would have received excellent care at AGH in Pittsburgh as well, but Cleveland is a little bit easier logistically since my parents are near.
What will your treatment look like? There are 5 main treatments for breast cancer: surgery, chemotherapy, targeted therapy, radiation therapy, and hormone therapy. And I will be getting all of them! They are basically throwing everything they have at this cancer. The idea is that the surgery got out the whole cancerous mass. However, there may be cancerous microorganisms floating through my body. The chemo and other therapies are designed to kill any microorganisms, to prevent any from coming back. As for all the treatments, I already has my surgery, so that is done. Over the next 5 months I will be getting chemotherapy and targeted therapy (16 rounds of chemotherapy in total). The first 4 rounds of chemo will be every other week. The last 12 rounds of chemo will be weekly. My plan is to have my chemo on Fridays so that I can recover on the weekends and return to work on Mondays. The targeted therapy is an IV drug that is similar to chemotherapy. It is called Herceptin and will attack a special feature of my breast cancer called HER2. This drug has been called a 'miracle drug' by some because it is so effective at attacking that protein of the cancer cells. We were actually very thankful to find out that I was HER2+ because that meant that I could take this drug! I will get the Herceptin with my chemo for the last 12 rounds, and then I will get it every 3 weeks for up to 1 year (until next November-ish). After my chemo is done, I will do a month of radiation therapy everyday. From what I understand, the radiation is directed at my chest wall for just a few minutes every day, and it is designed to kill any lingering cancer cells in the chest wall. After I am done with radiation, then I will start the hormone therapy. Hormone therapy will be a pill that I will take every day for 5-10 years. Another feature of my cancer is that it is estrogen+ and progesterone+, so it feeds on estrogen or progesterone. The idea behind the hormone therapy is that it will block the estrogen in my body in order to prevent recurrence. These treatments will not be easy, but we are thankful to be at a place where we are now working on the solution.
How did the fertility treatments go? They went great! It was a lot of work to go through the process of freezing embryos, but we are not complaining because it was really important to us. We are still floored by the fact that a foundation would pay the $12,000 for us. We are beyond thankful. After many appointments and nightly injections into my abdomen, we had the retrieval last Friday, the 12th. It was a relatively simple procedure for me (I mean, after a double mastectomy my standards have adjusted) and I had no pain afterward. They called to let us know that they were able to fertilize 12 eggs successfully and will be freezing the embryos for us to use at a later time. They usually shoot for about 10 good eggs, so 12 sounded good to us. Plus, kids are cheaper by the dozen, aren't they?
In other news, I talked with my awesome boss today and we have planned for me to return to work part-time next Tuesday, September 23rd. She has been very understanding and is willing to be flexible with my schedule as I go through chemotherapy these next few months. Pray that blessings are heaped on her :)
Other than that, we are just preparing for me to start chemo on Thursday. We are curious how I will react since chemo is so individualized. We will let you know how everything goes once we lift our heads above water again! For now, here are some pictures from my past week...
My sister Eliz came to hang out and watch movies for a day :)
Natalie, my mom, and I had a blast trying on wigs over the weekend. I did find one that I liked, but we found this one to be particularly hilarious. Don't I look like Kat from 'Garth and Kat' of SNL? I could not stop laughing. (In case you have misunderstood, this is NOT the one that I chose.)
katie
Monday, September 8, 2014
Fertility, PET scans, and the Edinboro Sky
Here is an update on a few things:
1. We have decided to go with Dr. Halle Moore at the Cleveland Clinic as my oncologist. We feel really good about the care that I will get at the Cleveland Clinic and that I will get from her. When we met with her she was kind, relatable, decisive and brilliant. All of the things one could want in an oncologist! She set out a treatment schedule of chemotherapy (over next 5 months), targeted therapy (for a year starting in November), radiation therapy (everyday for a month once chemo is done), and hormone therapy (a pill that I will take everyday for the next 5-10 years). Basically, they are throwing everything that they have at this cancer. My doctors feel confident in the treatments that they have, and so do we. We also know that I have youth, general health, support, a sense of Peace, and a positive attitude on my side! At this point, on this day, we feel hopeful that the treatment will take care of it and I will be starting to feel healthy again by next spring/summer. My hope and plan is to work during the treatments as long as my job is able to continue being flexible with me and give me almost every Friday off. I would like to work because I love my job and I want to maintain a sense of normalcy.
2. We are going through fertility treatments right now! We are doing the first half of IVF to retrieve eggs and then freeze embryos for a few years until my doctor says that I am healthy enough to carry a child. Right now, it is a little crazy with going to Cleveland for appointments every other day and Craig giving me fertility shots in my abdomen every night, but we are SO thankful for this opportunity, for this modern medicine, and for the Partnership Foundation that is covering the cost for us. The minor surgery for retrieval will most likely be happening next weekend, which is exciting!
3. Also, I have a PET scan tomorrow (Tuesday). Please pray for us tomorrow because this PET scan is supposed to tell us if the cancer has spread to anywhere else in my body. We are obviously praying that it has not, and we would appreciate if you would pray that with us. Also, please pray for our hearts if we find out that it has. It is certainly not a death sentence, but it does make things more complicated, and I am not sure how much more bad news our little hearts can handle at this time.
4. Chemo is set to start at the end of this month, so pray that I will continue to heal physically so that I can be as strong as possible going into the chemo.
5. Lastly, here are a couple glimpses into my life the past few days:
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1. We have decided to go with Dr. Halle Moore at the Cleveland Clinic as my oncologist. We feel really good about the care that I will get at the Cleveland Clinic and that I will get from her. When we met with her she was kind, relatable, decisive and brilliant. All of the things one could want in an oncologist! She set out a treatment schedule of chemotherapy (over next 5 months), targeted therapy (for a year starting in November), radiation therapy (everyday for a month once chemo is done), and hormone therapy (a pill that I will take everyday for the next 5-10 years). Basically, they are throwing everything that they have at this cancer. My doctors feel confident in the treatments that they have, and so do we. We also know that I have youth, general health, support, a sense of Peace, and a positive attitude on my side! At this point, on this day, we feel hopeful that the treatment will take care of it and I will be starting to feel healthy again by next spring/summer. My hope and plan is to work during the treatments as long as my job is able to continue being flexible with me and give me almost every Friday off. I would like to work because I love my job and I want to maintain a sense of normalcy.
2. We are going through fertility treatments right now! We are doing the first half of IVF to retrieve eggs and then freeze embryos for a few years until my doctor says that I am healthy enough to carry a child. Right now, it is a little crazy with going to Cleveland for appointments every other day and Craig giving me fertility shots in my abdomen every night, but we are SO thankful for this opportunity, for this modern medicine, and for the Partnership Foundation that is covering the cost for us. The minor surgery for retrieval will most likely be happening next weekend, which is exciting!
3. Also, I have a PET scan tomorrow (Tuesday). Please pray for us tomorrow because this PET scan is supposed to tell us if the cancer has spread to anywhere else in my body. We are obviously praying that it has not, and we would appreciate if you would pray that with us. Also, please pray for our hearts if we find out that it has. It is certainly not a death sentence, but it does make things more complicated, and I am not sure how much more bad news our little hearts can handle at this time.
4. Chemo is set to start at the end of this month, so pray that I will continue to heal physically so that I can be as strong as possible going into the chemo.
5. Lastly, here are a couple glimpses into my life the past few days:
Our dear friends, Sarah and Chris came to visit. These are the things that we did: went to the Edinboro Highland Games, watched Seinfeld, and road-tripped to Cleveland for a doctors appointment! This was taken at Edinboro Lake.
A view from my walk this morning. Can I just say that the sky in Edinboro is beautiful?!
Friday, September 5, 2014
I'm Hanging In There
For those of you that are wondering: I'm hanging in there.
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Each day is different. Most hours are different. Some minutes are different. I go up, I go down, most of the time I am a little bit above the middle, so that's good.
Here are some things that are consistently true of my life these days:
1. Each day I feel a little bit better and I am able to do more. Some milestones in the last few days have been: sitting up in bed by myself, reaching up to turn on a lamp by myself, and putting in my own ponytail!
2. Cancer is overwhelming. Like, really overwhelming. But there are pieces of Light in the midst of this messiness and I am looking for those. I have found them in unexpected kindnesses, people I love, and belly laughs. I have also found them in soft jammies, deep naps, and nature.
Soft jammies and time in nature (at Edinboro Lake).
Notes from loved ones.
3. My short term memory is terrible. Could be the drugs. Could be that it is overwhelming to have cancer. But I do know that I have to set reminders for everything, I often forget what I am doing if I am interrupted in the middle of something, and I wonder if this is what it is a little bit what it is like to have ADHD.
4. People are nicer to you if they know that you have cancer. And people don't expect a lot of you if they know you have cancer AND that you just had surgery. I use that to my advantage. For instance, you are reading this post and forgiving me for the fact that it is so choppy... because I have cancer. Thanks.
5. I cannot predict how I will feel or what I will be doing at any given time. Sudden mood changes: one minute I am happy, the next minute I am annoyed. Sudden physical changes: one minute I am exhausted, the next minute I am ready to walk to the kitchen. Sudden life changes: one minute I am free to chat with a friend, the next minute something comes up and I cannot handle any phone calls. Sorry friends. Thanks for understanding. I have cancer.
6. Lastly, I have good people around me. Here are some of the people below that have been able to be physically present. (Not pictured is Daddy-o Tom Robb, who came to oncologist appointments to help us sort through all of the details. Thanks, Dad!)
My mom took care of me for the first week on the days that Craig had to work. Natalie came to help too!
This stud is a Professional Husband. I love him.
This is Grace. She is my friend. She came to take care of me for Week 2! She rules.
Sunday, August 31, 2014
Cancer Update
So a lot has happened in the past week and it has been a very difficult week to say the least. We have been very busy attending various doctor appointments and Katie has been working hard to recover from her surgery in the midst of this.
We received some news from the pathology report that we were hoping not to hear. Cancer was found in some of the lymph nodes and to be invasive in the breast. Based on this information they are staging it as a stage 3 cancer. This came as very shocking and scary news and we have been grappling with processing this while at the same time meeting with doctors to get a treatment plan in place as quickly as possible.
On Friday we met with Dr. Halle Moore, a medical oncologist out of Cleveland Clinic. We felt as though the visit with Dr. Moore went very well and she comes highly recommended. Dr. Moore says this is an aggressive form of cancer and, given Katie's young age, she is recommending an aggressive treatment regiment to try to eradicate the cancer. Starting in a few weeks, Katie will be undergoing chemotherapy for a few months, followed by radiation therapy and another IV drug similar to chemotherapy. Once this regiment is complete, which will be about a year, she will then take an anti-hormonal medication for at least five years. On Tuesday, we will be getting a second opinion from another medical oncologist in Pittsburgh.
Due to the chemotherapy, another thing we've had to plan for is preserving Katie's fertility. The process to best preserve Katie's fertility is to harvest and freeze embryos that can be implanted via IVF at a later time. This process typically costs up to $15,000. However, we have been very fortunate to come into contact with a fertility doctor out of the Cleveland area who has set up a foundation. This foundations allows cancer patients who are at risk of losing their fertility to receive these procedures at no cost. This has been an incredible relief to say the least. The plan is to complete the egg retrieval before Katie begins chemotherapy. This means more doctor appointments, but it is something that is of vital importance to us, so it's worth it.
Dr. Moore also would like for Katie to have a PET-CT scan soon in order to see if the cancer has spread to anywhere else in her body. We do not yet have a date for this scan but we anticipate having it in the next week or two. The prospect of the cancer spreading to another area of Katie's body is very scary. Please pray and send positive thoughts that this scan comes back completely clear.
Thank you to everybody for your continued support. This news changes the reality of the cancer for us. We will most likely not be able to update the blog as often due to the craziness of this time. We may have a friend do most of the updates for us going forward. We still appreciate cards and other ways of support. We also welcome your thoughts and prayers as we wade through these new waters. We are hopeful and optimistic that the treatment will be successful. Katie is a very strong person and has a lot of support around her to aid her in this process.
This is a picture of Katie and Dr. Goldfarb on Friday. He is the doctor who will be directing Katie's fertility treatment. He also set up the foundation that covers the cost for cancer patients. We think he's great.
Here is a picture from last Monday of Katie opening letters/cards of support. She really appreciates these and the other ways that you all have been supporting her.
Thank you,
Craig (and Katie)
We received some news from the pathology report that we were hoping not to hear. Cancer was found in some of the lymph nodes and to be invasive in the breast. Based on this information they are staging it as a stage 3 cancer. This came as very shocking and scary news and we have been grappling with processing this while at the same time meeting with doctors to get a treatment plan in place as quickly as possible.
On Friday we met with Dr. Halle Moore, a medical oncologist out of Cleveland Clinic. We felt as though the visit with Dr. Moore went very well and she comes highly recommended. Dr. Moore says this is an aggressive form of cancer and, given Katie's young age, she is recommending an aggressive treatment regiment to try to eradicate the cancer. Starting in a few weeks, Katie will be undergoing chemotherapy for a few months, followed by radiation therapy and another IV drug similar to chemotherapy. Once this regiment is complete, which will be about a year, she will then take an anti-hormonal medication for at least five years. On Tuesday, we will be getting a second opinion from another medical oncologist in Pittsburgh.
Due to the chemotherapy, another thing we've had to plan for is preserving Katie's fertility. The process to best preserve Katie's fertility is to harvest and freeze embryos that can be implanted via IVF at a later time. This process typically costs up to $15,000. However, we have been very fortunate to come into contact with a fertility doctor out of the Cleveland area who has set up a foundation. This foundations allows cancer patients who are at risk of losing their fertility to receive these procedures at no cost. This has been an incredible relief to say the least. The plan is to complete the egg retrieval before Katie begins chemotherapy. This means more doctor appointments, but it is something that is of vital importance to us, so it's worth it.
Dr. Moore also would like for Katie to have a PET-CT scan soon in order to see if the cancer has spread to anywhere else in her body. We do not yet have a date for this scan but we anticipate having it in the next week or two. The prospect of the cancer spreading to another area of Katie's body is very scary. Please pray and send positive thoughts that this scan comes back completely clear.
Thank you to everybody for your continued support. This news changes the reality of the cancer for us. We will most likely not be able to update the blog as often due to the craziness of this time. We may have a friend do most of the updates for us going forward. We still appreciate cards and other ways of support. We also welcome your thoughts and prayers as we wade through these new waters. We are hopeful and optimistic that the treatment will be successful. Katie is a very strong person and has a lot of support around her to aid her in this process.
Thank you,
Craig (and Katie)
Nights at the Hospital
It has been overwhelming to think about posting since there is so much to process, so much happening, just so much. But I thought that it would be best to start small. Here is something I wrote a few days ago about my 2 nights in the hospital.
I wrote this on Tuesday:
Right now I am doing so much better than I expected. To think that I just had major surgery 4 days ago and I am already up and about, taking short walks, going to the bathroom myself, and getting small things for myself is amazing. I was frail for about 2 days and then my body started kicking into high gear. I hardly have any pain, and I am feeling remarkable good! Unfortunately, they found some cancer in the lymph nodes in their initial test during surgery. So they went ahead and took out as many lymph nodes as they could in my left armpit. I will try to walk you through the last 4 days.
I had my bilateral mastectomy with initial reconstruction on Friday, the 22nd. The surgery was about 6 1/2 hours, I recovered for about 2 hours, and then Craig and my mom got to come back and see me. Recovering was interesting because I was in and out of sleep for many hours. The recovery room was a weird orphanage-like room with lots of beds lined up, and in between losing consciousness I could hear people call for nurses, get sick, and cry out in pain. I remember being in pain when I first woke up, but they took care of me and quickly hooked me up with my very own morphine drip. The food of the gods. I think some family visited me that night, but I mostly just gave into sleep whenever I felt like it.
They were days of many firsts. My first night ever sleeping in a hospital. It's an odd experience. Someone strange barges into your room every 2 hours to do something for you. Most of them were kind nurses or well-meaning doctors. However, there was a strange man with a briefcase that barged in and offered to sit and watch me all night. Um, no thank you. (Ethan from Lost, anybody??) Craig had that covered. That night I drifted in and out of very deep, mouth open, drooling sleep. It was cute. Another cute thing was also a first: a catheter. Also: having a kind nurse wipe you as if you were an adult baby. I was channeling my inner Benjamin Button. All strange firsts that I can now cross off my bucket list. Done and done!
Day 2 started out really good. They took me off the drip and started me on Norco pills. I got my catheter out, got help walking to the bathroom, sat up in a chair, got a visit from some friends. All was going well and good. Then suddenly the morphine was fully out of my system and the Norco was not working for me. Thus started the worst of it all. Saturday later afternoon, evening, and night were very long hours of pain. Craig stayed awake to comfort me and advocate for me. I remember that a friend from church came to visit me. She anointed me with oil and prayed over me. Doctors and nurses started giving me morphine injections to keep me as comfortable as possible throughout the night. That did help. I was not sure how I was going to make it through the night.
This is a picture from Saturday. I was feeling alright at this point but it got worse as the day wore on.
By morning they decided to change my pain pills to Percocet in order to try to get me off the morphine. And Sunday morning, sabbath, my friends, was the turning point! They figured out that Percocet worked well for me. Also, my nurse Linda lovingly whipped me into shape. When I pitifully could not raise the pain pills to my mouth and asked Craig to do it for me, Linda was all like, "No, Honey. You need to do that yourself. And you need to be getting out of bed and walking the halls. You are going to get pneumonia and a blood clot if you keep up with this." Thank you, Linda. With some working pain pills in my system, I was willing to try these things. A few hours later I was washing my face, putting my mascara, walking the halls, and dancing in my room with my husband! What an amazing turn-around!
Here's a picture of me Sunday morning with Craig, my sister Nat, and my dad when I was feeling much better.
I was able to leave that Sunday afternoon and have been getting physically stronger ever since. Craig and my mom have been doting on me and caring for my every need. Nurses are saying that my scars look good. There is some swelling and tingling, but time will tell if that lingers. Overall, I am recovering well from the surgery, and I am thankful for that. Thanks for your prayers!
This picture was taken on Monday during my brief walk outside for some fresh air!
I wrote this on Tuesday:
Right now I am doing so much better than I expected. To think that I just had major surgery 4 days ago and I am already up and about, taking short walks, going to the bathroom myself, and getting small things for myself is amazing. I was frail for about 2 days and then my body started kicking into high gear. I hardly have any pain, and I am feeling remarkable good! Unfortunately, they found some cancer in the lymph nodes in their initial test during surgery. So they went ahead and took out as many lymph nodes as they could in my left armpit. I will try to walk you through the last 4 days.
I had my bilateral mastectomy with initial reconstruction on Friday, the 22nd. The surgery was about 6 1/2 hours, I recovered for about 2 hours, and then Craig and my mom got to come back and see me. Recovering was interesting because I was in and out of sleep for many hours. The recovery room was a weird orphanage-like room with lots of beds lined up, and in between losing consciousness I could hear people call for nurses, get sick, and cry out in pain. I remember being in pain when I first woke up, but they took care of me and quickly hooked me up with my very own morphine drip. The food of the gods. I think some family visited me that night, but I mostly just gave into sleep whenever I felt like it.
They were days of many firsts. My first night ever sleeping in a hospital. It's an odd experience. Someone strange barges into your room every 2 hours to do something for you. Most of them were kind nurses or well-meaning doctors. However, there was a strange man with a briefcase that barged in and offered to sit and watch me all night. Um, no thank you. (Ethan from Lost, anybody??) Craig had that covered. That night I drifted in and out of very deep, mouth open, drooling sleep. It was cute. Another cute thing was also a first: a catheter. Also: having a kind nurse wipe you as if you were an adult baby. I was channeling my inner Benjamin Button. All strange firsts that I can now cross off my bucket list. Done and done!
Day 2 started out really good. They took me off the drip and started me on Norco pills. I got my catheter out, got help walking to the bathroom, sat up in a chair, got a visit from some friends. All was going well and good. Then suddenly the morphine was fully out of my system and the Norco was not working for me. Thus started the worst of it all. Saturday later afternoon, evening, and night were very long hours of pain. Craig stayed awake to comfort me and advocate for me. I remember that a friend from church came to visit me. She anointed me with oil and prayed over me. Doctors and nurses started giving me morphine injections to keep me as comfortable as possible throughout the night. That did help. I was not sure how I was going to make it through the night.
By morning they decided to change my pain pills to Percocet in order to try to get me off the morphine. And Sunday morning, sabbath, my friends, was the turning point! They figured out that Percocet worked well for me. Also, my nurse Linda lovingly whipped me into shape. When I pitifully could not raise the pain pills to my mouth and asked Craig to do it for me, Linda was all like, "No, Honey. You need to do that yourself. And you need to be getting out of bed and walking the halls. You are going to get pneumonia and a blood clot if you keep up with this." Thank you, Linda. With some working pain pills in my system, I was willing to try these things. A few hours later I was washing my face, putting my mascara, walking the halls, and dancing in my room with my husband! What an amazing turn-around!
I was able to leave that Sunday afternoon and have been getting physically stronger ever since. Craig and my mom have been doting on me and caring for my every need. Nurses are saying that my scars look good. There is some swelling and tingling, but time will tell if that lingers. Overall, I am recovering well from the surgery, and I am thankful for that. Thanks for your prayers!
Friday, August 22, 2014
Surgery update
Hey all,
Katie just got out of recovery room after surgery and is getting ready to go to her hospital room. She is doing fine and has been extremely strong throughout the day. She was in surgery from about 8am to 2pm. We will update with more info soon. Please continue to keep her in your thoughts and prayers!
Craig
Katie just got out of recovery room after surgery and is getting ready to go to her hospital room. She is doing fine and has been extremely strong throughout the day. She was in surgery from about 8am to 2pm. We will update with more info soon. Please continue to keep her in your thoughts and prayers!
Craig
Thursday, August 21, 2014
Surgery Time Tomorrow
Hi!
Just a quick note to let you all know that my surgery time tomorrow is 7:30am. Craig and I need to be there at 5am. I believe that the surgery will take about 4 hours. Prayers are appreciated!
Katie
Just a quick note to let you all know that my surgery time tomorrow is 7:30am. Craig and I need to be there at 5am. I believe that the surgery will take about 4 hours. Prayers are appreciated!
Katie
Friday, August 15, 2014
I Feel Your Prayers
I just want you to know that feel your prayers. I know that a lot of you are praying for me. Many people have added me to their prayer chains. So many people that don't even know personally are praying for me.
And I feel it. And I thank you.
I believe that God wants good things for us. I believe that God cares deeply about me. I believe that God's presence is with me. I don't know that God will heal me miraculously, but I do believe that God is with me each step of the journey. I consider my doctors, modern medicine, and support from loved ones all as a gift from God. In a lot of ways, they are my answers to prayer when all I can manage to form in my brain is' "Help."
I have been asking for strength and peace. And I feel those things most of the time. Thank you for praying those things with me. Thank you for holding me in your hearts and prayers.
I leave you now with a quote from one of my favorite authors. It is one of the truest things I have ever read about prayer. The writer is Anne Lamott. If you haven't read anything by her, drop everything you are doing, go to the nearest library, and check out Traveling Mercies. Stat. If you have read one of her books, you can rest easy, eat a cookie, and read the quote below. It is from her book, Help, Thanks, Wow: Three Essential Prayers.
And I feel it. And I thank you.
I believe that God wants good things for us. I believe that God cares deeply about me. I believe that God's presence is with me. I don't know that God will heal me miraculously, but I do believe that God is with me each step of the journey. I consider my doctors, modern medicine, and support from loved ones all as a gift from God. In a lot of ways, they are my answers to prayer when all I can manage to form in my brain is' "Help."
I have been asking for strength and peace. And I feel those things most of the time. Thank you for praying those things with me. Thank you for holding me in your hearts and prayers.
I leave you now with a quote from one of my favorite authors. It is one of the truest things I have ever read about prayer. The writer is Anne Lamott. If you haven't read anything by her, drop everything you are doing, go to the nearest library, and check out Traveling Mercies. Stat. If you have read one of her books, you can rest easy, eat a cookie, and read the quote below. It is from her book, Help, Thanks, Wow: Three Essential Prayers.
"So prayer is our sometimes real selves trying to communicate with the Real, with Truth, with the Light. It is us reaching out to be heard, hoping to be found by a light and warmth in the world, instead of darkness and cold. Even mushrooms respond to light - I suppose they blink their mushroomy eyes, like the rest of us.
Light reveals us to ourselves, which is not always so great if you find yourself in a big disgusting mess, possibly of your own creation. But like sunflowers we turn toward light. Light warms, and in most cases it draws us to itself. And in this light, we can see beyond our modest receptors, to what is way beyond us, and deep inside." -Anne Lamott
Ways to Help
Hi Loved Ones,
Many of you have been asking if there is any way that you can help us as we go through this process. Any takers for the following tasks?
Go to my doctors appointments for me.
Make daily phone calls to doctors/insurance.
Go ahead and do the mental processing about what it is like to have cancer.
Have a bilateral mastectomy. What?! No takers?
Actually, if I know all of you, you would willingly take those burdens from me in a heartbeat. However, honestly, much of this is just something that we have to get through. Thankfully, we have A LOT of support as we go through it.
Although much of this is on us, Craig and I have brainstormed about practical things that others can do for us that would be helpful. Below is a list of the few things that we thought of.
1. Emotional Support
If you think of us, feel free to send us a card, an email, or a text of support. Many of you have been doing this already, and our apartment is covered in awesome cards. As I am a lover of cards and handwritten notes, this has been a great reminder of support as we go throughout this process. Feel free to send one to Craig one too. He has been hanging in there like a champ and doesn't get any of the fun fame of being a cancer patient.
Our new address in Edinboro is:
411 Waterford St. #110
Edinboro, PA 16412
2. Meals in Pittsburgh
Some people are able to love best through food. If you are one of those people and you live in or around the Pittsburgh area, you can make a meal for us to have in our freezer for my recovery. My sister, Natalie, has set up a MealBaby account, has offered to be the reception site for the meals, and will make sure that the meals get to our freezer in Edinboro. You can access that site and sign up here. There will be 2 drop off times, one on Friday the 22nd, and one two weeks later. The drop off location will be Natalie's house in Pittsburgh, and the address is listed on MealBaby.
3. Help with Financial Costs
Please know that Craig and I have never been in a position to help someone financially in any great way. If you are in that position, I get that and respect that. Just send us a card. If you have $5, $10, or $20 to give, it would help pay for a copay, parking in a parking garage, driving to Pittsburgh for appointments, etc.. Natalie is also spearheading a GiveForward fundraising account to raise money to cover costs. You can visit that site here. The total cost to be raised is listed on the site and it is our best estimate. Right now that amount will cover three items: Medical costs not cover by insurance (copays, deductibles, coinsurance), transportation to/from Pittsburgh for treatment over the next couple of months, and money to pay for some bills in the absence of my lost wages (more on that below). We will adjust the amount if it goes up or down. If for some reason people donate more than we need, we will happily donate any extra money to a good cause. We are not trying to make money off of this :) Also, if you would prefer to send us a check instead of going through the site, you can do that and we will deduct it from the amount we are asking for.
So those are the 3 practical things that we have thought of so far. Other than that, just keep doing what you are doing! Craig and I have been overwhelmed by how much we need and how much people have stepped in to meet those individual needs with what they have to offer. It is a beautiful thing. I pray that I can receive well and give well in my life.
Good news related to work/expenses! Penn State Behrend employees are awesome and have banded together to donate 17 vacation days to me so far! That is almost 3 1/2 weeks! This is EXTREMELY helpful for the 4-6 weeks that I will be out of work after my surgery. This limits the amount of lost wages and financial burden. Plus, it makes me feel really supported at work and great about being a Penn State Behrend employee. I feel super thankful and awed by this. If you are one of those employees who donated a vacation day, I will never know who you are individually, but thank you.
Prayers for my surgery next Friday!
Katie
Many of you have been asking if there is any way that you can help us as we go through this process. Any takers for the following tasks?
Go to my doctors appointments for me.
Make daily phone calls to doctors/insurance.
Go ahead and do the mental processing about what it is like to have cancer.
Have a bilateral mastectomy. What?! No takers?
Actually, if I know all of you, you would willingly take those burdens from me in a heartbeat. However, honestly, much of this is just something that we have to get through. Thankfully, we have A LOT of support as we go through it.
Although much of this is on us, Craig and I have brainstormed about practical things that others can do for us that would be helpful. Below is a list of the few things that we thought of.
1. Emotional Support
If you think of us, feel free to send us a card, an email, or a text of support. Many of you have been doing this already, and our apartment is covered in awesome cards. As I am a lover of cards and handwritten notes, this has been a great reminder of support as we go throughout this process. Feel free to send one to Craig one too. He has been hanging in there like a champ and doesn't get any of the fun fame of being a cancer patient.
Our new address in Edinboro is:
411 Waterford St. #110
Edinboro, PA 16412
2. Meals in Pittsburgh
Some people are able to love best through food. If you are one of those people and you live in or around the Pittsburgh area, you can make a meal for us to have in our freezer for my recovery. My sister, Natalie, has set up a MealBaby account, has offered to be the reception site for the meals, and will make sure that the meals get to our freezer in Edinboro. You can access that site and sign up here. There will be 2 drop off times, one on Friday the 22nd, and one two weeks later. The drop off location will be Natalie's house in Pittsburgh, and the address is listed on MealBaby.
3. Help with Financial Costs
Please know that Craig and I have never been in a position to help someone financially in any great way. If you are in that position, I get that and respect that. Just send us a card. If you have $5, $10, or $20 to give, it would help pay for a copay, parking in a parking garage, driving to Pittsburgh for appointments, etc.. Natalie is also spearheading a GiveForward fundraising account to raise money to cover costs. You can visit that site here. The total cost to be raised is listed on the site and it is our best estimate. Right now that amount will cover three items: Medical costs not cover by insurance (copays, deductibles, coinsurance), transportation to/from Pittsburgh for treatment over the next couple of months, and money to pay for some bills in the absence of my lost wages (more on that below). We will adjust the amount if it goes up or down. If for some reason people donate more than we need, we will happily donate any extra money to a good cause. We are not trying to make money off of this :) Also, if you would prefer to send us a check instead of going through the site, you can do that and we will deduct it from the amount we are asking for.
So those are the 3 practical things that we have thought of so far. Other than that, just keep doing what you are doing! Craig and I have been overwhelmed by how much we need and how much people have stepped in to meet those individual needs with what they have to offer. It is a beautiful thing. I pray that I can receive well and give well in my life.
Good news related to work/expenses! Penn State Behrend employees are awesome and have banded together to donate 17 vacation days to me so far! That is almost 3 1/2 weeks! This is EXTREMELY helpful for the 4-6 weeks that I will be out of work after my surgery. This limits the amount of lost wages and financial burden. Plus, it makes me feel really supported at work and great about being a Penn State Behrend employee. I feel super thankful and awed by this. If you are one of those employees who donated a vacation day, I will never know who you are individually, but thank you.
Prayers for my surgery next Friday!
Katie
Sunday, August 10, 2014
Biopsy Results and Surgery Decisions
Hi all,
We were in Pittsburgh this past Tuesday for an MRI-biopsy and an appointment with the plastic surgeon. First was the MRI. Let me be honest, the MRI-guided biopsy is not a fun procedure. It is actually quite difficult to go through. The good news is that I got through it and do not have to go through one in the foreseeable future! The reason that I had it done was that there was an area in the right breast that showed up in a previous MRI as "possibly concerning." So they used MRI imaging to locate the spot and then take a sample. Surprising to me, I had a small audience of medical staff as this is apparently a unique procedure. So that was weird. But there is something about breast cancer that helps you get over any sort of modesty in medical settings. The head of the radiology department at AGH was supervising the procedure and he took good care of Craig and me at the appointment. He said that he has been following my case from the beginning and has taken special interest in it since he has two daughters. If that means I get extra good care, then so be it!
It took 48 hours to get the results of the biopsy from the lab, and they called me on Thursday morning with the results. Guess what? BENIGN! Woohoo! From what we can tell at this point, there is no cancer in the right breast. This is great news.
Although there is no cancer in the right breast, I have made the personal decision to do a bilateral mastectomy regardless. This is a decision that I feel confident with. I made the decision to possibly avoid hormone therapy,for preventative reasons, and for aesthetic reasons (think: symmetry). I feel thankful that I even get to make this decision and the decision wasn't made for me with the biopsy results.
Our other appointment on Tuesday was with the plastic surgeon, Dr. White. That went really well. We were just touching base before the surgery date about the reconstruction. We were able to ask all of our questions, and Dr. White is very patient to answer all of them fully.
My surgery is in less than 2 weeks. It is starting to feel real. Thinking about it is sobering. I am thankful that the time of waiting is coming to a close, but I am also starting to think about the difficulties of having such a major surgery. Continue to pray for strength and peace.
I will write soon about a few ideas that Craig and I have come up with of things people might be able to support us. In the meantime, just keep doing what you are doing!
We were in Pittsburgh this past Tuesday for an MRI-biopsy and an appointment with the plastic surgeon. First was the MRI. Let me be honest, the MRI-guided biopsy is not a fun procedure. It is actually quite difficult to go through. The good news is that I got through it and do not have to go through one in the foreseeable future! The reason that I had it done was that there was an area in the right breast that showed up in a previous MRI as "possibly concerning." So they used MRI imaging to locate the spot and then take a sample. Surprising to me, I had a small audience of medical staff as this is apparently a unique procedure. So that was weird. But there is something about breast cancer that helps you get over any sort of modesty in medical settings. The head of the radiology department at AGH was supervising the procedure and he took good care of Craig and me at the appointment. He said that he has been following my case from the beginning and has taken special interest in it since he has two daughters. If that means I get extra good care, then so be it!
It took 48 hours to get the results of the biopsy from the lab, and they called me on Thursday morning with the results. Guess what? BENIGN! Woohoo! From what we can tell at this point, there is no cancer in the right breast. This is great news.
Although there is no cancer in the right breast, I have made the personal decision to do a bilateral mastectomy regardless. This is a decision that I feel confident with. I made the decision to possibly avoid hormone therapy,for preventative reasons, and for aesthetic reasons (think: symmetry). I feel thankful that I even get to make this decision and the decision wasn't made for me with the biopsy results.
Our other appointment on Tuesday was with the plastic surgeon, Dr. White. That went really well. We were just touching base before the surgery date about the reconstruction. We were able to ask all of our questions, and Dr. White is very patient to answer all of them fully.
My surgery is in less than 2 weeks. It is starting to feel real. Thinking about it is sobering. I am thankful that the time of waiting is coming to a close, but I am also starting to think about the difficulties of having such a major surgery. Continue to pray for strength and peace.
I will write soon about a few ideas that Craig and I have come up with of things people might be able to support us. In the meantime, just keep doing what you are doing!
Friday, August 1, 2014
Results from Genetics
We got the results back from genetic testing this week and the results are good!
I do not have any of the genetic gene mutations that they were testing for. Woohoo! They were mostly testing for the BRCA-1 and BRCA-2 genes. You may have heard of them in the news (Angelina Jolie...). They were also testing for a few other gene mutations. The idea behind these gene mutations is that there are certain genes that basically don't do their job in fighting cancer, and we were finding out if that is a missing link in my DNA.
I have cancer anyway, but the reason that this is such good news is that if I had the gene, it would be something that my siblings could possibly have and my children could inherit. My family members would have had to have testing. Now, it is as simple as my sisters getting mammograms every year for screening. The gene mutation also would have meant that I would have had a higher chance of getting other cancers in my lifetime, like ovarian cancer. So it is great that I don't have that. I have no greater risk of getting ovarian cancer than the next 27 year old.
Then why did I get cancer? We will never know. It seems as though their is a slight genetic predisposition because my maternal grandmother had breast cancer post-menopause. However, the main cause is something that we will never know. And I am okay with that answer. I would prefer the unknown over the genetic mutation. Overall, it is good to have some good news in the midst of this!
I do not have any of the genetic gene mutations that they were testing for. Woohoo! They were mostly testing for the BRCA-1 and BRCA-2 genes. You may have heard of them in the news (Angelina Jolie...). They were also testing for a few other gene mutations. The idea behind these gene mutations is that there are certain genes that basically don't do their job in fighting cancer, and we were finding out if that is a missing link in my DNA.
I have cancer anyway, but the reason that this is such good news is that if I had the gene, it would be something that my siblings could possibly have and my children could inherit. My family members would have had to have testing. Now, it is as simple as my sisters getting mammograms every year for screening. The gene mutation also would have meant that I would have had a higher chance of getting other cancers in my lifetime, like ovarian cancer. So it is great that I don't have that. I have no greater risk of getting ovarian cancer than the next 27 year old.
Then why did I get cancer? We will never know. It seems as though their is a slight genetic predisposition because my maternal grandmother had breast cancer post-menopause. However, the main cause is something that we will never know. And I am okay with that answer. I would prefer the unknown over the genetic mutation. Overall, it is good to have some good news in the midst of this!
My Fancy New Job
I wanted to give a quick update about my new job, since I know this is something that many of you have been wondering about. Many of you walked through the long journey to find a job in higher education. And many of you celebrated with me when I got the job offer in early June to be a Career Counselor at Penn State Behrend (Erie)! It was such a relief as there were aspects of my previous job that were really taking a toll on my physical and mental health. Phew!
Even before I started, I set up a time to meet with my supervisor because I wanted to inform her of my diagnosis and that I would be needing 4-6 weeks off after surgery. I came to this decision because I wanted to give her a head's up that I would need time off, and I wanted her to have all of the information about me. I realized that I could do very little in regards to how she reacted, so I might as well get it over with. I was very nervous about this conversation.
Well, as many of you know, she reacted in the best possible way. She was amazingly supportive, consoling, and reassuring. She had someone very close to her that had been diagnosed at a young age with breast cancer, so she had personal experience with the complexity of this. She also is just an amazingly supportive individual. I cried with relief when I left her office. She had given me exactly the kind of support that I needed from a boss. She had reassured me that they would support me through this whole process, that I could take off as much time as I needed, and that my job would be here when I returned. Wow. Thank you.
Craig and I moved up to Edinboro, PA in early July and I started my job here at Penn State on July 14th. I was eager to start, and my coworkers were so sweet. They showed me to my (big!) office and within 10 minutes they had my name on the door. They even gave me a cubbie in the bathroom to keep personal belongings! My coworkers trickled into my office to introduce themselves. Overall, the feel of the office is supportive, healthy, student-focused, and hard-working. I told the rest of my coworkers during our staff meeting that Friday morning. It was difficult to share, not because I didn't want them to know, but because I feel the weight of it whenever I share it for the first time. I recognize that it is a little traumatizing to hear someone tell you that they have cancer, and the images that flood your mind are horrible. Although it was difficult to share, they were very supportive, and I have not doubt that they will continue to support me through this process. They have given me the freedom to take time off for ANY appointments that I have coming up. Some will check in with me occasionally to get updates. Overall, the word I would use to describe this office is supportive. What a gift.
Starting a new job is like being in a foreign country. Simple tasks take twice as long, you trying to figure out the nuances of the culture so you don't make a fool of yourself, and the most important thing is knowing where the bathroom is. Check. Check. Check. While I am tired at the end of the day, there are aspects of starting this job that are different from any other job I have started. I realized that this is my first job where I have done something very similar before. Since I was at CMU as an intern in their career office, I have done many of the tasks that I do here. It is so much easier to adjust when the learning curve isn't crazy steep! While I am a girl that loves a challenge, as displayed by my past job choices, at this point in my life I can appreciate a little more sanity on the job front.
Overall, I am really happy with my job and think that it is a great fit. I feel very thankful for it. It was a difficult process to get here, and I know that a lot of things fell into place for the job and me to match up. I feel settled in this career move. I feel excited about all that I will do and learn. I feel hopeful that I will ground myself more as a counselor. And I feel thankful for the livability that this job offers. One of the best parts about this job? My sanity!
Finally, I would like to add that I do miss aspects of my previous job. I miss some of the kids that I was working closely with in therapy, and I miss a few really great coworkers (you know who you are, EHS!). I can say confidently, though, that this job is a good fit for me at this point in my life. For a lot of reasons. And I am thankful.
Even before I started, I set up a time to meet with my supervisor because I wanted to inform her of my diagnosis and that I would be needing 4-6 weeks off after surgery. I came to this decision because I wanted to give her a head's up that I would need time off, and I wanted her to have all of the information about me. I realized that I could do very little in regards to how she reacted, so I might as well get it over with. I was very nervous about this conversation.
Well, as many of you know, she reacted in the best possible way. She was amazingly supportive, consoling, and reassuring. She had someone very close to her that had been diagnosed at a young age with breast cancer, so she had personal experience with the complexity of this. She also is just an amazingly supportive individual. I cried with relief when I left her office. She had given me exactly the kind of support that I needed from a boss. She had reassured me that they would support me through this whole process, that I could take off as much time as I needed, and that my job would be here when I returned. Wow. Thank you.
Craig and I moved up to Edinboro, PA in early July and I started my job here at Penn State on July 14th. I was eager to start, and my coworkers were so sweet. They showed me to my (big!) office and within 10 minutes they had my name on the door. They even gave me a cubbie in the bathroom to keep personal belongings! My coworkers trickled into my office to introduce themselves. Overall, the feel of the office is supportive, healthy, student-focused, and hard-working. I told the rest of my coworkers during our staff meeting that Friday morning. It was difficult to share, not because I didn't want them to know, but because I feel the weight of it whenever I share it for the first time. I recognize that it is a little traumatizing to hear someone tell you that they have cancer, and the images that flood your mind are horrible. Although it was difficult to share, they were very supportive, and I have not doubt that they will continue to support me through this process. They have given me the freedom to take time off for ANY appointments that I have coming up. Some will check in with me occasionally to get updates. Overall, the word I would use to describe this office is supportive. What a gift.
Starting a new job is like being in a foreign country. Simple tasks take twice as long, you trying to figure out the nuances of the culture so you don't make a fool of yourself, and the most important thing is knowing where the bathroom is. Check. Check. Check. While I am tired at the end of the day, there are aspects of starting this job that are different from any other job I have started. I realized that this is my first job where I have done something very similar before. Since I was at CMU as an intern in their career office, I have done many of the tasks that I do here. It is so much easier to adjust when the learning curve isn't crazy steep! While I am a girl that loves a challenge, as displayed by my past job choices, at this point in my life I can appreciate a little more sanity on the job front.
Overall, I am really happy with my job and think that it is a great fit. I feel very thankful for it. It was a difficult process to get here, and I know that a lot of things fell into place for the job and me to match up. I feel settled in this career move. I feel excited about all that I will do and learn. I feel hopeful that I will ground myself more as a counselor. And I feel thankful for the livability that this job offers. One of the best parts about this job? My sanity!
Finally, I would like to add that I do miss aspects of my previous job. I miss some of the kids that I was working closely with in therapy, and I miss a few really great coworkers (you know who you are, EHS!). I can say confidently, though, that this job is a good fit for me at this point in my life. For a lot of reasons. And I am thankful.
Wednesday, July 23, 2014
We have a surgery date!
We have a surgery date! It is August 22nd. Although we would like that to be sooner, we also want to make sure that we have the best doctors. So, because of difficulty lining up doctors' schedules, July being a popular vacation month, and the busyness of the doctors that we have chosen, that is the best we can do. The breast surgeon (basically the architect of my treatment) does not seem too concerned about the date being a few weeks away. She assured us that I have probably had this cancer for awhile and that it is a slow-growing cancer. If she was very concerned about getting this out as soon as possible, she would urge us to go with a different plastic surgeon. Even if we did go with a different plastic surgeon, it would only be a difference of a week or two. So, we have decided to go with the August 22nd surgery and stick with the doctors that we feel most comfortable with.
Some of you may be wondering about my doctors appointments in Pittsburgh last Tuesday, the 15th. Here is a picture of us having so much fun at Allegheny General Hospital:
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Overall, it was a successful day because we were able to fit in the genetics counseling/testing, an MRI, and an initial consult with my plastic surgeon. It was great to have it all on one day, because then I didn't have to worry about taking too much time off of work. Our genetic counselor, Kyla, was awesome and very patient with all of our questions. Both my mom and sister Natalie were able to come to that appointment with us, which is great, because the results of the genetic testing may ultimately affect them. At the appointment Kyla basically explained genetics, genes, and DNA. She explained the breast cancer genes (BRCA-1 and BRCA-2) and how they are passed down. I gave a saliva sample and they will be testing for mutations in my genes that may make me susceptible to cancers (like breast cancer). If I have one of these genes, it would explain why I got breast cancer at age 27. However, it would also mean that I am very susceptible to other cancers in my lifetime, as well, like ovarian cancer. It would also mean that I got the gene from my mom or dad's side of the family and that my siblings have a 50% chance of having the gene as well. Any future children would also have a 50% chance of have the gene. Needless to say, we are hoping that when we get the results in 2 1/2 weeks that I do not have the gene! However, if it turns out that I do, I will have regular screenings, my siblings would get regular screenings, and family members would have the opportunity to get genetic testing as well. Overall, it was a lot of helpful information and Kyla could not have been better at helping us to understand it. They promise to get my results to me within 3 weeks.
Next was my consultation with Dr. White, my plastic surgeon. After meeting him, Craig and I feel like I am in really good hands for my reconstructive surgery. He is a highly recommended doctor with excellent bedside manner. He basically went over all of the options for reconstructive surgery and which ones he thought I would be a good candidate for. Essentially, implants are the best option for me because I don't have enough fat on my body to make a boob or two. It was a weird, backwards compliment! He explained the whole process to us, the risks and results, and has high hopes that I will come out of this surgery and heal very well. It is a multiple step process to fill the implants, so I will have several follow up appointments with him in the weeks following the surgery. Some friends still maintain that this is all my elaborate scheme to get a boob job. Perhaps. Anyway, I have one more appointment with him before my surgery, and it will be on August 5th.
Lastly, I had my MRI. I was so tired by this point, that I pretty much fell asleep during the MRI. It was great. Fairly quick and mostly painless. The point of the MRI was to get a better picture of what might be going on in my left breast (and lymph nodes), and to see if anything suspicious is going on in my right breast. There is a really high false alarm rate with MRIs, so they warned me that I would most likely have to come back for an additional biopsy if anything lit up in the MRI. Dr. Erb (my breast surgeon) called the next day with the results. She said that the lymph nodes under the left armpit look normal, which is great. They will still do the sentinel node procedure during my mastectomy to test the lymph nodes and make sure. She said that there might be something going on with the right breast because it looked similar in one of the quadrants to what the left breast looks like. This could very well be just my hormones or something different going on that day. Or it could be cancer. It is recommended that I have an MR-guided biopsy of the area to find out what is going on. Honestly, I am not too worried about it. It is probably nothing. It could be cancer, but I am already having surgery. The worst case scenario is if it is invasive cancer, but that doesn't seem likely to me because my right breast checked out normally on the mammogram. We are hoping to schedule my biopsy on August 5th, the same day as the plastic surgeon appointment, so that I only have to take a day off of work. We should get the results of the biopsy by the end of that week. the results of the biopsy and the genetic testing results will guide us on single mastectomy vs. bilateral mastectomy.
Other than my appointments, we are just weighing the pros and cons of treatment possibilities like single vs. bilateral mastectomy, and hormone therapy (tamoxifen). We have some time to make those decisions, though.
The other big news from this last week is that I started my new job!! More on that in a later post...
Katie
Some of you may be wondering about my doctors appointments in Pittsburgh last Tuesday, the 15th. Here is a picture of us having so much fun at Allegheny General Hospital:
Overall, it was a successful day because we were able to fit in the genetics counseling/testing, an MRI, and an initial consult with my plastic surgeon. It was great to have it all on one day, because then I didn't have to worry about taking too much time off of work. Our genetic counselor, Kyla, was awesome and very patient with all of our questions. Both my mom and sister Natalie were able to come to that appointment with us, which is great, because the results of the genetic testing may ultimately affect them. At the appointment Kyla basically explained genetics, genes, and DNA. She explained the breast cancer genes (BRCA-1 and BRCA-2) and how they are passed down. I gave a saliva sample and they will be testing for mutations in my genes that may make me susceptible to cancers (like breast cancer). If I have one of these genes, it would explain why I got breast cancer at age 27. However, it would also mean that I am very susceptible to other cancers in my lifetime, as well, like ovarian cancer. It would also mean that I got the gene from my mom or dad's side of the family and that my siblings have a 50% chance of having the gene as well. Any future children would also have a 50% chance of have the gene. Needless to say, we are hoping that when we get the results in 2 1/2 weeks that I do not have the gene! However, if it turns out that I do, I will have regular screenings, my siblings would get regular screenings, and family members would have the opportunity to get genetic testing as well. Overall, it was a lot of helpful information and Kyla could not have been better at helping us to understand it. They promise to get my results to me within 3 weeks.
Next was my consultation with Dr. White, my plastic surgeon. After meeting him, Craig and I feel like I am in really good hands for my reconstructive surgery. He is a highly recommended doctor with excellent bedside manner. He basically went over all of the options for reconstructive surgery and which ones he thought I would be a good candidate for. Essentially, implants are the best option for me because I don't have enough fat on my body to make a boob or two. It was a weird, backwards compliment! He explained the whole process to us, the risks and results, and has high hopes that I will come out of this surgery and heal very well. It is a multiple step process to fill the implants, so I will have several follow up appointments with him in the weeks following the surgery. Some friends still maintain that this is all my elaborate scheme to get a boob job. Perhaps. Anyway, I have one more appointment with him before my surgery, and it will be on August 5th.
Lastly, I had my MRI. I was so tired by this point, that I pretty much fell asleep during the MRI. It was great. Fairly quick and mostly painless. The point of the MRI was to get a better picture of what might be going on in my left breast (and lymph nodes), and to see if anything suspicious is going on in my right breast. There is a really high false alarm rate with MRIs, so they warned me that I would most likely have to come back for an additional biopsy if anything lit up in the MRI. Dr. Erb (my breast surgeon) called the next day with the results. She said that the lymph nodes under the left armpit look normal, which is great. They will still do the sentinel node procedure during my mastectomy to test the lymph nodes and make sure. She said that there might be something going on with the right breast because it looked similar in one of the quadrants to what the left breast looks like. This could very well be just my hormones or something different going on that day. Or it could be cancer. It is recommended that I have an MR-guided biopsy of the area to find out what is going on. Honestly, I am not too worried about it. It is probably nothing. It could be cancer, but I am already having surgery. The worst case scenario is if it is invasive cancer, but that doesn't seem likely to me because my right breast checked out normally on the mammogram. We are hoping to schedule my biopsy on August 5th, the same day as the plastic surgeon appointment, so that I only have to take a day off of work. We should get the results of the biopsy by the end of that week. the results of the biopsy and the genetic testing results will guide us on single mastectomy vs. bilateral mastectomy.
Other than my appointments, we are just weighing the pros and cons of treatment possibilities like single vs. bilateral mastectomy, and hormone therapy (tamoxifen). We have some time to make those decisions, though.
The other big news from this last week is that I started my new job!! More on that in a later post...
Katie
Wait, you have cancer?!
Yes, I do.
I hope that I got to most of you to let you know individually about my diagnosis. For those of you that are hearing this for the first time, I figured that it would be helpful to hear a back-story about my diagnosis
I did sporadic self-exams in the past and I found a lump in my left breast in November 2013 that I went to the gynecologist to get checked out. They were not too concerned because young women having dense, fibrous breasts is very common. Most commonly, it is a fibroid (fatty tissue) that goes away.They sent me that day to get an ultrasound, just to make sure. The radiologist that did my breast ultrasound ended up telling me that she did not see anything unusual and that it was just "abundant glandular tissue." Basically, fatty tissue. What a positive way to phrase that! She told me that it was normal and to just come back if it got any bigger or changed a lot. No biggie.
Fast forward to a few months later, May 2014. I am realizing that the lump is starting to hurt a little bit and it is all the time, not just during my period. And, in fact, I realized that it actually IS bigger than it was in November. However, I am not an alarmist, so I make an appointment with my new gynecologist at West Penn Hospital and think it is probably just that fatty tissue. Again, the gynecologist is not too concerned, but she wants me to get an ultrasound again, and she wants me to get a mammogram this time. Perfect. Fine. Scheduled for later that week.
Wednesday morning in June, I am thinking that I will do a few quick tests and be back to work by lunchtime. They did the mammograms of both of my breasts. Things seem to be going fine. However, they were not fine, because the radiologist comes in the room, sits down, and explains to me that she is VERY concerned about what she is seeing on the mammogram. Apparently, she saw quite a bit of calcification, which can be a red flag to cancer. She wanted to do a biopsy of my breast that morning. This was heavy news to hear. I was not expecting it. I got emotional, obviously, and they asked me if I wanted to call someone to come be with me. Since we weren't expecting anything like this to happen, Craig was actually out of town for the morning preparing our new apartment in Edinboro. So I called my sister, Natalie, who lived a few minutes from the hospital and made herself free to be with me. It was really wonderful to have her there since Craig could not be there right away.
So, basically, the rest of the morning they assigned a nurse, Barb, to "babysit" me. Barb was awesome. She and her counterpart, Jane, had me laughing so hard that my face hurt. They also were very gentle with me and explained each step of the procedure to me as it was happening. In fact, Barb sat behind me during the biopsy, held my hand the whole time, and explained what was happening. I felt so blessed to have these great West Penn nurses with me that day. I could tell that it was serious that day because their words of comfort were not, "It's probably nothing!" They were, "There are great treatments for breast cancer." And, "There still is a small chance that it is nothing!"
We had two terrible days of waiting for the results of the biopsy and then Craig and I got the call that it was cancerous. So, here's the deal. It is a very treatable cancer, from what they can tell. It is a localized form of cancer called DCIS (ductal carcinoma in situ). To be honest, this is the best type of cancer to have. From what they can tell, it is slow growing and only localized to the milk ducts in my breast. It has not broken through the ducts and become invasive, from what they can tell. Due to how extensive it is throughout my breast, I will need to have a mastectomy. To be real, this sucks. A mastectomy is not something that I wanted at age 27, before I have had my children. But we are hopeful that the mastectomy will be the worst of it. And I will have reconstructive surgery. When they do the mastectomy next month, August 2014, they will be testing my lymph nodes and the rest of my breast tissue to check for cancer. We and the doctors feel hopeful that it is not the case, since my first biopsy came back as "not invasive," but it could happen. If that is the case that the cancer is more than what we think it is, we will be looking at the possibility of other treatments, like chemotherapy, radiation, and hormone therapy. If it is just the DCIS that we think it is, the mastectomy should pretty much take care of it, with the possibility of hormone therapy after (taking a daily pill for 5 years).
Why did I get breast cancer at 27? I don't know. It does not seem to run in my family. The only family member that has had breast cancer is my maternal grandmother who had it post-menopause. Also, I like to think of myself as a healthy and active girl. It seems to be one of those fluke things that just happened. However, in order to rule out any genetic component, I had genetic testing done (still waiting for the results!) to see if I have one of those mutated 'breast cancer genes' (BRCA-1 or BRCA-2).
So that is the story. The next step is a few more tests and doctors appointments before my mastectomy and reconstructive surgery. Then, we will take it from there! Craig and I feel incredibly supported. Friends and family have rallied around us to support in whatever way they can. Just so everyone knows, I do not mind if people know that I have cancer, and I am generally fine to talk about it. Most of the time we feel like our normal selves, and sometimes we get tired or irritable or scared. I pray for strength and peace for us everyday. And I feel God's presence behind and before us. Mostly, I feel it through the love and support of our dearest friends and family. Thank you, if you are one of those people!
I hope that I got to most of you to let you know individually about my diagnosis. For those of you that are hearing this for the first time, I figured that it would be helpful to hear a back-story about my diagnosis
I did sporadic self-exams in the past and I found a lump in my left breast in November 2013 that I went to the gynecologist to get checked out. They were not too concerned because young women having dense, fibrous breasts is very common. Most commonly, it is a fibroid (fatty tissue) that goes away.They sent me that day to get an ultrasound, just to make sure. The radiologist that did my breast ultrasound ended up telling me that she did not see anything unusual and that it was just "abundant glandular tissue." Basically, fatty tissue. What a positive way to phrase that! She told me that it was normal and to just come back if it got any bigger or changed a lot. No biggie.
Fast forward to a few months later, May 2014. I am realizing that the lump is starting to hurt a little bit and it is all the time, not just during my period. And, in fact, I realized that it actually IS bigger than it was in November. However, I am not an alarmist, so I make an appointment with my new gynecologist at West Penn Hospital and think it is probably just that fatty tissue. Again, the gynecologist is not too concerned, but she wants me to get an ultrasound again, and she wants me to get a mammogram this time. Perfect. Fine. Scheduled for later that week.
Wednesday morning in June, I am thinking that I will do a few quick tests and be back to work by lunchtime. They did the mammograms of both of my breasts. Things seem to be going fine. However, they were not fine, because the radiologist comes in the room, sits down, and explains to me that she is VERY concerned about what she is seeing on the mammogram. Apparently, she saw quite a bit of calcification, which can be a red flag to cancer. She wanted to do a biopsy of my breast that morning. This was heavy news to hear. I was not expecting it. I got emotional, obviously, and they asked me if I wanted to call someone to come be with me. Since we weren't expecting anything like this to happen, Craig was actually out of town for the morning preparing our new apartment in Edinboro. So I called my sister, Natalie, who lived a few minutes from the hospital and made herself free to be with me. It was really wonderful to have her there since Craig could not be there right away.
So, basically, the rest of the morning they assigned a nurse, Barb, to "babysit" me. Barb was awesome. She and her counterpart, Jane, had me laughing so hard that my face hurt. They also were very gentle with me and explained each step of the procedure to me as it was happening. In fact, Barb sat behind me during the biopsy, held my hand the whole time, and explained what was happening. I felt so blessed to have these great West Penn nurses with me that day. I could tell that it was serious that day because their words of comfort were not, "It's probably nothing!" They were, "There are great treatments for breast cancer." And, "There still is a small chance that it is nothing!"
We had two terrible days of waiting for the results of the biopsy and then Craig and I got the call that it was cancerous. So, here's the deal. It is a very treatable cancer, from what they can tell. It is a localized form of cancer called DCIS (ductal carcinoma in situ). To be honest, this is the best type of cancer to have. From what they can tell, it is slow growing and only localized to the milk ducts in my breast. It has not broken through the ducts and become invasive, from what they can tell. Due to how extensive it is throughout my breast, I will need to have a mastectomy. To be real, this sucks. A mastectomy is not something that I wanted at age 27, before I have had my children. But we are hopeful that the mastectomy will be the worst of it. And I will have reconstructive surgery. When they do the mastectomy next month, August 2014, they will be testing my lymph nodes and the rest of my breast tissue to check for cancer. We and the doctors feel hopeful that it is not the case, since my first biopsy came back as "not invasive," but it could happen. If that is the case that the cancer is more than what we think it is, we will be looking at the possibility of other treatments, like chemotherapy, radiation, and hormone therapy. If it is just the DCIS that we think it is, the mastectomy should pretty much take care of it, with the possibility of hormone therapy after (taking a daily pill for 5 years).
Why did I get breast cancer at 27? I don't know. It does not seem to run in my family. The only family member that has had breast cancer is my maternal grandmother who had it post-menopause. Also, I like to think of myself as a healthy and active girl. It seems to be one of those fluke things that just happened. However, in order to rule out any genetic component, I had genetic testing done (still waiting for the results!) to see if I have one of those mutated 'breast cancer genes' (BRCA-1 or BRCA-2).
So that is the story. The next step is a few more tests and doctors appointments before my mastectomy and reconstructive surgery. Then, we will take it from there! Craig and I feel incredibly supported. Friends and family have rallied around us to support in whatever way they can. Just so everyone knows, I do not mind if people know that I have cancer, and I am generally fine to talk about it. Most of the time we feel like our normal selves, and sometimes we get tired or irritable or scared. I pray for strength and peace for us everyday. And I feel God's presence behind and before us. Mostly, I feel it through the love and support of our dearest friends and family. Thank you, if you are one of those people!
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