It's been a weird week. I have so many new thoughts spinning around in my brain. And I don't yet quite know how to verbalize them all, at least not in a way that will make total sense. So this post may be all over the place as I try to give voice to some of these things. I don't mean it to sound like a sad pity party or that I'm looking for sympathy or anything, but I hope it will help others to know what can go (and probably is going) on inside of a cancer patient's brain, including mine. Especially the darker, scarier stuff.
I should first start off by sharing that I have no new health updates or news to share about the actual cancer/treatment/etc. My first official oncology appointment is in about a week, and I am sure to have more news then. So this week has been a challenge because there is nothing new that I've learned, nothing new that I can do, and I'm struggling with how to try and live as normally as possible when absolutely nothing feels normal anymore.
I'm really struggling to find stability in my life. I know everything is going to change again as soon as I have my appointment, but until then I have felt like I can't just sit around and be sad. But to be very honest, all I want to do is sit around and be sad. About 90 percent (if not more) of my brain activity is just me thinking over and over again, "I have cancer. I have cancer. I have cancer. I have cancer," and on and on and on. It doesn't leave a lot of room for other thoughts and my focus is very off. I can't focus on school or practicing for class because in the back of my mind there's a voice saying, "Well, you might be dying anyway, so why even bother with school anymore?" It's also difficult to talk about things happening in the future or that could happen in the future because I don't even know what my life/schedule is going to look like beyond next week, and I could certainly be in treatment for a year or more. It's not fun.
Even when I have gone out to do things this week, I have been distracted. In the rare times when I've actually been able to forget about the fact that I have cancer, I'll feel a pain from my right breast and the biopsy site, a physical reminder that I am very sick. For example, this past weekend I went to Medieval Times with my boyfriend and two of our friends. It was so much fun! The show was so entertaining and there were times when I wasn't thinking about cancer at all. But then I'd feel a little twinge of pain, and I would be snapped right back to the reality of my new life.
I also think I have what I am beginning to call "cancer guilt." It's this guilty feeling that I get in thinking that if I sit too long to be sad or don't feel like going out and doing stuff, people will judge me for being lazy or overly dramatic. Since I'm not in treatment yet and I don't look sick, I'm afraid people will think less of me for not wanting to be out and about as I normally am because I look the same as always and have no physical excuse for not keeping to my normal schedule. Even I feel like I'm not really ill because I don't look or feel sick yet! But I don't feel mentally or emotionally good about going to class at night or work or out in general, but I'm doing it because that's what I am supposed to be doing and would be doing if I weren't sick. But I also don't feel mentally or emotionally good about not going, so there's this huge battle going on in my mind.
I also haven't been sleeping very well, and I am sure that is not helping my emotional state. Often I wake up in the middle of night and can't fall back asleep for hours because I am just thinking about all the "what ifs" that can happen during my upcoming doctor appointment and beyond-- What if the cancer has spread? What if I'm dying? What if my boyfriend/family/friends get annoyed with me? What if my insurance doesn't pay for this? What if I have to drop out of school? What if I lose both of my breasts? What if I lose my hair? What if it never grows back the same? What if I beat this and the cancer comes back even worse? What if, what if, what if...
As I said... it's just been a weird week.
In spite of all of this, I have been trying to keep busy and somewhat distracted (even if it's not fully working). I did some figure modeling for my favorite group of artists, Grotesque Burlesque! I will write another actual post about that, coming soon. I meant for it to be in this one, but I don't want it tainted with all my negative thoughts expressed here. As I already said, I went to Medieval Times for an early birthday celebration-- that was awesome!! I went back to work for a day and also went to class last week and caught up on my online school work. And last night I went to dance class/rehearsal for a new Modet Dance Collective piece! And Mary came over last night to hang out a bit before she headed to another party. So I am trying to keep my spirits up and see friends. But it is definitely a process. Thanks for being patient as I adjust to this "new normal."
I am very ready to meet with my doctor who will hopefully become a part of my oncology team. I'm ready to start treatments, whatever they are, so that I can start to take some control back and get this out of me. Mostly, I'm just ready to know more about what is going on and how it will affect my life. Even if I get the worst news possible, at least I will know. The "not-knowing" is really the worst part. Hopefully I can survive another week of waiting!
Monday, January 29, 2018
Tuesday, January 23, 2018
New Year, New Diagnosis (or That Time I Learned I Had Breast Cancer)
Wow... Okay, first of all, I realize it has been almost a year since I last made a blog post. Fortunately, it was a cool post saying that Mary and I had won the Soska Sisters' American Mary film contest! In that time (March 2017 to now) I have done a lot of cool other stuff-- enjoyed another great C2E2; went on a couple of small vacation trips with my dude, Noah; took a short trip to Atlanta with Mary to see the Labyrinth exhibit at the Center for Puppetry Arts (my favorite movie of all time); met the Soska Sisters at Days of the Dead Convention; and, oh yeah, found out I have Breast Cancer.
So Welcome! I'm not exactly re-branding this blog. Before my diagnosis, I had actually planned on getting back into writing and updating it. But, as they say, the best laid plans... It hasn't even been a week and I am already finding myself sharing a lot of news with a lot people. And with that I have been typing, texting, telling, and emailing the same stuff over and over. I am not complaining about this-- I love that I already have a huge army of supporters and people who want to know how I am doing and what is going on. But it can be overwhelming.
So in an effort to keep myself more emotionally grounded and also to conserve my energy so I can use it to heal and get better, I want to write about what I am going through, any updates, news, and just about the process and treatment in general so that my friends and family and other young women have a place to go and a resource to see how I am doing and what is going on. And, yes, along the way I will also try to sneak in a few posts that don't have anything to do with cancer (or at least not as the main focus) to show that I'm still hanging on, living my life, and trying to have fun!
The Basic Rundown Story:
In about late September/early October, I started to notice a weird lump/bump near my right breast. It wasn't quite in my breast tissue and it wasn't quite in my armpit. It was weird and concerning, but nothing too major. I'd had other weird bumps before in that area, and they had always seemed to go away. I didn't panic and decided to see what would happen.
Coming up to November, it didn't seem as if the lump was going away. I did some research and all signs pointed to "Don't panic. It's very unlikely this is breast cancer." Many legit cancer websites said that lumps can be caused by hormonal fluctuations, so if you are premenopausal you should try to go through a normal cycle and see if that makes any difference; if not, go see your doctor. So I decided to go off my birth control and have a fully normal cycle not controlled by any hormones. I did, and there was no change. This was the beginning of December. My semester in school was about to end, the holidays were coming up, and I already had my yearly OBGYN appointment scheduled for early January.
Since my OBGYN has been seeing me since I was 15 and has been examining my breasts every year for the last almost 20 years, I felt totally comfortable having her check this spot out and give me her opinion. I went to my appointment on January 10th, a Wednesday. The next day, she had me scheduled to see a radiologist on that Monday. On January 15th, I had my first ever mammogram and then ultrasound on my right breast. Two days later on January 17th, I was back for a double biopsy of the breast lump and a lymph node.
And on January 18th, 2018, I was officially diagnosed with Invasive Ductal Carcinoma. So Breast Cancer at a very young age.
What I Know (and Don't Know):
Right now there are more unknowns than knowns. For example, I do not know what "stage" my cancer is at. I probably won't until I go through more testing. Obviously cancer stages are a well-known and thrown around term, so that is something everyone has been asking me. I don't know. What I do know is that breast cancer in young women is very rare. It is typically more aggressive. My cancer is rapidly growing. This news is not great, but given my age, it is not surprising.
So my basic "stats" that I know of are this-- I have Invasive Ductal Carcinoma, the most common form of breast cancer, but very uncommon for someone my age. I am (very slightly, but still) Estrogen Positive (ER+), Progesterone Negative (PR-), and HER2 Positive. The HER2+ is a protein marker and what is feeding my cancer (if I understand it correctly). HER2+ cases are more aggressive, but can be more specifically targeted by certain chemo. My lymph node biopsy was positive, which means the cancer has spread at least to the closest lymph node. So I have lymph node involvement, but that does not necessarily mean the cancer has spread all over my body. For example, there are some "Stage 2" breast cancers that have lymph node involvement. It's not great news, but it is not devastating.
My next step is to meet with a Surgical Oncologist, specifically a breast surgeon/oncologist. I have an appointment in two weeks to meet with one of the top doctors in Chicago at Northwestern Hospital. I have heard nothing but positive things about him and the full breast oncology team there, so I am really hopeful and anxious to move on to the next steps! And what are those next steps? Well, based on the research and reading I have done, it seems like I will need some further tests done. Probably an MRI, possibly a PET scan, or more. After that, it seems like it will be likely (based on my HER2 results and my age) that I will get chemo, possibly before my breast surgery. But all of this is just speculation and I am going to leave it to my team to come up with a plan and hopefully I will agree!
How I Am Feeling:
Physically, I feel really good. I don't feel sick at all. That's in part why this is so hard to wrap my head around everything. I feel good. I feel healthy. I haven't even gotten a cold or this horrible flu or anything this season. I did notice I was a little low on energy, more so than usual, but I am also getting older, dealing with school and work, so that didn't seem too unusual. I don't know how to reconcile the fact that I feel great with the knowledge that I am very, very sick right now. However, I heard that is what many women experience-- they have no symptoms, don't feel sick, and yet...
So emotionally, I'm not doing too awesome. Well, it varies. I am trying to stay really positive, so I have moments when I am upbeat, ready to tackle all of this! And then there are times where I break down in tears much like I did when I got the news my lymph node is positive and I'm HER2+. It's a back and forth, for sure. I'm struggling with feeling completely out of control. Right now it just feels like things are happening to me and I'm not doing anything. I want to be in treatment, surgery, anything to get this cancer out of me. But until my appointment, there's not much else I can do, and that's driving me crazy. But all of these feelings are completely normal immediately after a diagnosis.
In Conclusion:
So that's where I am at. I have about two weeks left of this "holding pattern" while I wait for my initial consultation appointment. But from there, I hope to get moving on a plan and treatment and whatever else I have to do to kill this thing and get it out of my body! I already have an amazing group of friends behind me who have offered to help out, and that gives me encouragement. Even for those who aren't close by or don't have the time or resources to offer help, just the messages of love and support have been amazing. I appreciate them all and everyone so much.
As soon as I know more and have more information, I will share it here! For real. I promise. Until then, please feel free to reach out. Just be patient as I may not be able to respond immediately or I may not be in the best emotional state to respond right away and my responses may be short and sweet. It's a battle and a struggle and a journey. Email is the best way to communicate, or cards and letters are wonderful if you are a close friend and have my address.
Until then, thanks for reading and sticking with me! Much love to you all! I'm going to be a survivor.
So Welcome! I'm not exactly re-branding this blog. Before my diagnosis, I had actually planned on getting back into writing and updating it. But, as they say, the best laid plans... It hasn't even been a week and I am already finding myself sharing a lot of news with a lot people. And with that I have been typing, texting, telling, and emailing the same stuff over and over. I am not complaining about this-- I love that I already have a huge army of supporters and people who want to know how I am doing and what is going on. But it can be overwhelming.
So in an effort to keep myself more emotionally grounded and also to conserve my energy so I can use it to heal and get better, I want to write about what I am going through, any updates, news, and just about the process and treatment in general so that my friends and family and other young women have a place to go and a resource to see how I am doing and what is going on. And, yes, along the way I will also try to sneak in a few posts that don't have anything to do with cancer (or at least not as the main focus) to show that I'm still hanging on, living my life, and trying to have fun!
The Basic Rundown Story:
In about late September/early October, I started to notice a weird lump/bump near my right breast. It wasn't quite in my breast tissue and it wasn't quite in my armpit. It was weird and concerning, but nothing too major. I'd had other weird bumps before in that area, and they had always seemed to go away. I didn't panic and decided to see what would happen.
Coming up to November, it didn't seem as if the lump was going away. I did some research and all signs pointed to "Don't panic. It's very unlikely this is breast cancer." Many legit cancer websites said that lumps can be caused by hormonal fluctuations, so if you are premenopausal you should try to go through a normal cycle and see if that makes any difference; if not, go see your doctor. So I decided to go off my birth control and have a fully normal cycle not controlled by any hormones. I did, and there was no change. This was the beginning of December. My semester in school was about to end, the holidays were coming up, and I already had my yearly OBGYN appointment scheduled for early January.
Since my OBGYN has been seeing me since I was 15 and has been examining my breasts every year for the last almost 20 years, I felt totally comfortable having her check this spot out and give me her opinion. I went to my appointment on January 10th, a Wednesday. The next day, she had me scheduled to see a radiologist on that Monday. On January 15th, I had my first ever mammogram and then ultrasound on my right breast. Two days later on January 17th, I was back for a double biopsy of the breast lump and a lymph node.
And on January 18th, 2018, I was officially diagnosed with Invasive Ductal Carcinoma. So Breast Cancer at a very young age.
What I Know (and Don't Know):
Right now there are more unknowns than knowns. For example, I do not know what "stage" my cancer is at. I probably won't until I go through more testing. Obviously cancer stages are a well-known and thrown around term, so that is something everyone has been asking me. I don't know. What I do know is that breast cancer in young women is very rare. It is typically more aggressive. My cancer is rapidly growing. This news is not great, but given my age, it is not surprising.
So my basic "stats" that I know of are this-- I have Invasive Ductal Carcinoma, the most common form of breast cancer, but very uncommon for someone my age. I am (very slightly, but still) Estrogen Positive (ER+), Progesterone Negative (PR-), and HER2 Positive. The HER2+ is a protein marker and what is feeding my cancer (if I understand it correctly). HER2+ cases are more aggressive, but can be more specifically targeted by certain chemo. My lymph node biopsy was positive, which means the cancer has spread at least to the closest lymph node. So I have lymph node involvement, but that does not necessarily mean the cancer has spread all over my body. For example, there are some "Stage 2" breast cancers that have lymph node involvement. It's not great news, but it is not devastating.
My next step is to meet with a Surgical Oncologist, specifically a breast surgeon/oncologist. I have an appointment in two weeks to meet with one of the top doctors in Chicago at Northwestern Hospital. I have heard nothing but positive things about him and the full breast oncology team there, so I am really hopeful and anxious to move on to the next steps! And what are those next steps? Well, based on the research and reading I have done, it seems like I will need some further tests done. Probably an MRI, possibly a PET scan, or more. After that, it seems like it will be likely (based on my HER2 results and my age) that I will get chemo, possibly before my breast surgery. But all of this is just speculation and I am going to leave it to my team to come up with a plan and hopefully I will agree!
How I Am Feeling:
Physically, I feel really good. I don't feel sick at all. That's in part why this is so hard to wrap my head around everything. I feel good. I feel healthy. I haven't even gotten a cold or this horrible flu or anything this season. I did notice I was a little low on energy, more so than usual, but I am also getting older, dealing with school and work, so that didn't seem too unusual. I don't know how to reconcile the fact that I feel great with the knowledge that I am very, very sick right now. However, I heard that is what many women experience-- they have no symptoms, don't feel sick, and yet...
So emotionally, I'm not doing too awesome. Well, it varies. I am trying to stay really positive, so I have moments when I am upbeat, ready to tackle all of this! And then there are times where I break down in tears much like I did when I got the news my lymph node is positive and I'm HER2+. It's a back and forth, for sure. I'm struggling with feeling completely out of control. Right now it just feels like things are happening to me and I'm not doing anything. I want to be in treatment, surgery, anything to get this cancer out of me. But until my appointment, there's not much else I can do, and that's driving me crazy. But all of these feelings are completely normal immediately after a diagnosis.
In Conclusion:
So that's where I am at. I have about two weeks left of this "holding pattern" while I wait for my initial consultation appointment. But from there, I hope to get moving on a plan and treatment and whatever else I have to do to kill this thing and get it out of my body! I already have an amazing group of friends behind me who have offered to help out, and that gives me encouragement. Even for those who aren't close by or don't have the time or resources to offer help, just the messages of love and support have been amazing. I appreciate them all and everyone so much.
As soon as I know more and have more information, I will share it here! For real. I promise. Until then, please feel free to reach out. Just be patient as I may not be able to respond immediately or I may not be in the best emotional state to respond right away and my responses may be short and sweet. It's a battle and a struggle and a journey. Email is the best way to communicate, or cards and letters are wonderful if you are a close friend and have my address.
Until then, thanks for reading and sticking with me! Much love to you all! I'm going to be a survivor.
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