A year ago this week, I had a CT scan that showed very swollen lymph nodes in my abdomen. A year ago today, I read the CT scan summary report online and saw words like "likely lymphoma" flash across my computer screen. (By the way, I don't recommend reading any medical reports online before your doctor calls you with the results. Also, they shouldn't post those because people like me will always read them.) On the first day of teacher orientation last year, I got the call about my results. Phrases like " possibly cancer" and "maybe an infection" were thrown around. I had a biopsy at Brigham and Women's Hospital later that week and five days after that, on the third day of school, found out that I had cancer.
I remember those moments, days and weeks only through feelings. Shock. Exhaustion. Fear. Anger. Sadness. Dread. Heartache. I don't remember how I called my friends and told them. I don't remember how I got through telling all of my students. I remember the pain I felt calling my parents to tell them. I remember collapsing into Janelle's arms and knowing that our world would never be the same. I remember feeling so incredibly alone in my pain. While at times I still feel alone as I sit in fear, sadness, or anger, I also feel buoyed by my people and the beauty around me. By my kiddos. By the Arnold Arboretum. By storm cat. By my family and friends. When I think over this past year, I look back with gratitude, awe, and pride.
Tomorrow is our first day back for teacher orientation and I feel a bit unsettled. Perhaps in the back of my mind, I'm worried that I'll get another terrible phone call. But I won't. I just met with my oncologist on Friday and everything looked great. However, there's still a weird sense of dread sitting in my stomach. I think I'm waiting for my world to collapse again. And I'm not sure if I'll ever be rid of that fear. Once that rug gets pulled out from under you one time, I'm not sure how you can ever trust it again. I'm slowly learning how to find peace even with that unease still lingering.
Gratitude carried me through the roughest moments of this year. I think it's in my nature to look for the light. The good. The happiness. As I've been reflecting lately, I've realized that sometimes, in my attempt to get to a place of gratitude, I have buried my anger, sadness, or fear. In search of light or joy, I haven't fully let myself feel those really hard feelings sometimes. I'm just now coming to terms with some of the anger I feel towards cancer. I've felt anger about my low energy and stamina, the choices I've had to make, the financial strain of cancer treatment, my reliance on medical research, my fear, how this has impacted Janelle and my family, how cancer controls my future, the fertility conversations I've had to have, and the many many medical tests I've endured. I feel weird even writing about my anger because I don't want to appear to be ungrateful for my healthy and amazing life.
Over this past year, whenever I've felt anger, I've pushed it aside because gratitude is much easier for me to feel and experience. As a result, I've stumbled upon some pretty heavy anger as my 1-year diagnosis date approaches. In a way, this realization has given me the chance to use my anger as fuel to start fundraising for Dana-Farber and to celebrate my healthy body. Luckily, I've slowly been learning that anger and gratitude can coexist in me. I don't need to bury one to feel the other. I have to practice acknowledging both emotions and honoring how each needs to be expressed. I know it will take time. I hope the day will come when I revel in my gratitude but also sit in peace with my anger. Some day.
I've been reliving a lot in my mind and heart, as I didn't really process much of anything at the time. While it's painful to relive all of the horrible emotions that came along with my diagnosis and the beginning of treatment, it's also amazing to be here today. Healthy. Happy. Engaged. Blessed.
Here's to a new school year of health and celebration!
Also, please consider donating to the Jimmy Fund Walk. I will be walking with Janelle, my parents, Janelle's family, and friends. The money from the Jimmy Fund Walk goes towards Dana-Farber cancer research and patient programs. My future depends on medical advances in the field of follicular lymphoma so at times I feel quite desperate. Today, I'm just hopeful. So please donate to my walk and help make cancer part of my past. Thank you all of your ongoing support and encouragement. Every little thing helps.
Donate to my Jimmy Fund Walk!
Sunday, August 14, 2016
Sunday, May 15, 2016
Helpful vs. Hurtful - Learning to Navigate Words
Some days I look back on the past nine months in awe and disbelief of everything Janelle and I have gone through. In many ways, it's started to feel like a dream - a horrible nightmare. I can't possibly be a cancer survivor at the age of 27. But I am and I'm dreaming about the day my curls will come back.
Future thoughts and worries about starting a family, living until I'm old and gray, and finding peace along the way have taken up residence in my mind lately. More thoughts than worries. Living with cancer is complicated and disorienting for my brain that loves structure and order. I'm a survivor but not cured. I have a chronic condition but look healthy. I often feel great but other times I have to slow down. Usually I'm at peace but can also feel terrified for no reason.
Last month, Janelle and I attended a Young Adult Cancer Conference at Dana-Farber. It was not the most uplifting way to spend our weekend but gave us the chance to reflect on this journey with other young adults that are experiencing or have experienced similar challenges. We attended a session about dealing with hard comments, questions, or conversations about cancer with the strangers, friends, family, and acquaintances in our lives. It was a very helpful time for Janelle and I to reflect on the ways people have been helpful and hurtful in this experience. I'd love to recap some of our reflections here because people often ask me the best ways to talk about or ask about my cancer.
Things that are not helpful:
1. Please don't compare your tiredness or any symptoms of your pregnancy or being a parent to young children with the side effects of my cancer treatment. You had the amazing ability to choose to be a parent and raise children. I did not choose to get cancer and endure six months of chemo. My journey doesn't come with joyous memories, sticky fingers, and family time. It comes with scary prognoses and painful reality checks. I am not trying to minimalize your tiredness or stress because they are just as real as mine but right now, I'm not ready to listen to you talk about them.
2. Unless you're quickly complimenting my hair, please don't comment on it. It's just another daily reminder to me of the curls that I have lost and may not get back. My hair is growing on me but it's taken deliberate practice to slowly accept it.
3. Please don't tell me about someone else you knew who had cancer, especially if they died. It's just not helpful. Unless you want to connect me with this person because they may be a helpful mentor, please don't bring them up. I may be ready to hear about it at some other time, but not right now.
4. Please don't tell me about alternative therapies that I should've tried instead of chemo. Please don't tell me that I put poison in my body. Please understand that my doctor helped me make the choice to have intense chemo because the whole lymphoma team at Dana-Farber believed it had the best chance to put me in remission and extend my life.
5. Please don't tell me that you've heard chemo is not too bad nowadays. It's bad.
6. Also, don't tell me that you've heard my cancer is curable and is the good kind to get. It's not and no cancer is the good kind. Also, I have an oncologist to tell me everything I need to know.
* If you feel like you may have said something hurtful to me, please don't feel bad. I forgive you. We are all making mistakes. I am too. I'm posting these here because I now know what kinds of statements hurt me. I didn't know until I experienced them. Every cancer patient feels differently and probably has a different list of hurtful things.
Things that are helpful:
1. I am open to talking about how I'm feeling and coping. These last nine months have helped me embrace life and see myself in different ways. I'm more present and grateful for all that I have more now than I ever have been. If I'm not up for talking at that specific moment in time, I will just let you know.
2. Reach out. However, don't ever feel guilty for not reaching out enough or in the "best way" because those things aren't even possible. Every time someone reaches out to me to check-in, chat, send a funny picture, or ask a question, I feel loved. There is no right way to be a friend, colleague, or relative to me as a cancer survivor. There are only relationships that are growing and evolving as we all navigate this experience together. Some people wore bird socks. Great. Others sent letters. Awesome. Some people ran a race in my honor, sent me books, left funny voice mails, gave me hugs etc. I'm grateful and moved by all of it. Because each of you is being you. Don't change that because you think this circumstance calls for something different. It doesn't. It just asks that you and I acknowledge it together and wade through it.
3. Reminders that I'm not alone are helpful. Isolation has been one of the most terrifying feelings. Knowing I can reach out and find support is always helpful.
Every day, I see and feel love, support, beauty, and joy coming at me from so many people and places. We are blessed to live in such a beautiful world. Thank you for shining.
Future thoughts and worries about starting a family, living until I'm old and gray, and finding peace along the way have taken up residence in my mind lately. More thoughts than worries. Living with cancer is complicated and disorienting for my brain that loves structure and order. I'm a survivor but not cured. I have a chronic condition but look healthy. I often feel great but other times I have to slow down. Usually I'm at peace but can also feel terrified for no reason.
Last month, Janelle and I attended a Young Adult Cancer Conference at Dana-Farber. It was not the most uplifting way to spend our weekend but gave us the chance to reflect on this journey with other young adults that are experiencing or have experienced similar challenges. We attended a session about dealing with hard comments, questions, or conversations about cancer with the strangers, friends, family, and acquaintances in our lives. It was a very helpful time for Janelle and I to reflect on the ways people have been helpful and hurtful in this experience. I'd love to recap some of our reflections here because people often ask me the best ways to talk about or ask about my cancer.
Things that are not helpful:
1. Please don't compare your tiredness or any symptoms of your pregnancy or being a parent to young children with the side effects of my cancer treatment. You had the amazing ability to choose to be a parent and raise children. I did not choose to get cancer and endure six months of chemo. My journey doesn't come with joyous memories, sticky fingers, and family time. It comes with scary prognoses and painful reality checks. I am not trying to minimalize your tiredness or stress because they are just as real as mine but right now, I'm not ready to listen to you talk about them.
2. Unless you're quickly complimenting my hair, please don't comment on it. It's just another daily reminder to me of the curls that I have lost and may not get back. My hair is growing on me but it's taken deliberate practice to slowly accept it.
3. Please don't tell me about someone else you knew who had cancer, especially if they died. It's just not helpful. Unless you want to connect me with this person because they may be a helpful mentor, please don't bring them up. I may be ready to hear about it at some other time, but not right now.
4. Please don't tell me about alternative therapies that I should've tried instead of chemo. Please don't tell me that I put poison in my body. Please understand that my doctor helped me make the choice to have intense chemo because the whole lymphoma team at Dana-Farber believed it had the best chance to put me in remission and extend my life.
5. Please don't tell me that you've heard chemo is not too bad nowadays. It's bad.
6. Also, don't tell me that you've heard my cancer is curable and is the good kind to get. It's not and no cancer is the good kind. Also, I have an oncologist to tell me everything I need to know.
* If you feel like you may have said something hurtful to me, please don't feel bad. I forgive you. We are all making mistakes. I am too. I'm posting these here because I now know what kinds of statements hurt me. I didn't know until I experienced them. Every cancer patient feels differently and probably has a different list of hurtful things.
Things that are helpful:
1. I am open to talking about how I'm feeling and coping. These last nine months have helped me embrace life and see myself in different ways. I'm more present and grateful for all that I have more now than I ever have been. If I'm not up for talking at that specific moment in time, I will just let you know.
2. Reach out. However, don't ever feel guilty for not reaching out enough or in the "best way" because those things aren't even possible. Every time someone reaches out to me to check-in, chat, send a funny picture, or ask a question, I feel loved. There is no right way to be a friend, colleague, or relative to me as a cancer survivor. There are only relationships that are growing and evolving as we all navigate this experience together. Some people wore bird socks. Great. Others sent letters. Awesome. Some people ran a race in my honor, sent me books, left funny voice mails, gave me hugs etc. I'm grateful and moved by all of it. Because each of you is being you. Don't change that because you think this circumstance calls for something different. It doesn't. It just asks that you and I acknowledge it together and wade through it.
3. Reminders that I'm not alone are helpful. Isolation has been one of the most terrifying feelings. Knowing I can reach out and find support is always helpful.
Every day, I see and feel love, support, beauty, and joy coming at me from so many people and places. We are blessed to live in such a beautiful world. Thank you for shining.
Thursday, April 28, 2016
Body Love Revolution
I have always loved and nurtured my heart and mind, as tools I've been given to navigate and interact with the world. I never thought to nurture, respect, or appreciate my body. I've often felt proud of my mind and heart but I've rarely felt proud of my body. For most of my life, I've seen my body as an obstacle, annoyance, or unmet goal. I've viewed exercise and eating as means to get a different or better body. Until now, I never viewed my body as a gift or tool. Chemo changed how I see and value my body in a powerful way. Throughout chemo, I detached from my body in a healthy, meaningful way. My detachment helped me get through the side effects of chemo and my cancer-related feelings. I existed in my heart and mind during chemo as much as possible. After chemo however, I came back into my body with much more awareness, gratitude, and love. My body could feel nausea-free, take walks in the Arboretum, eat flavorful food, show strength and so much more. I started practicing yoga with an old instructor two to three times a week in March. Yoga has powerfully impacted this time of transition for me and there aren't words to really express all that it has done for me. It's helped me appreciate, be present, and feel the strength in my body every time I practice. Some days I feel like I've been living in the dark. How could I have ignored and devalued this essential, precious part of myself for all these years?
My body is not just a means to feeling attractive or worthy. Seeking attractiveness or worth using my body seem like foreign ideas to me now. My body is a gift. It allows me to experience movement, pleasure, joy, and strength. Eating and exercising are ways to embrace and fully experience my body, not just means to a different body. It's crazy to think about the ways I've taken my body for granted over the years. Even after six months of challenging chemo, my body can get me to work, do yoga, laugh, dance, and so much more. It's capable of so much, even after trauma. I want to shout from the tops of rooftops " Love your bodies while you can. Your bodies are more amazing than you realize!"
We have started calling this new transition for me my "Body Love Revolution". And weirdly enough, that totally sums up how I'm feeling lately. Holy monkeys. Our bodies are amazing tools for health, pleasure, and joy. If you can for me, think of three things you are grateful for about your body and share them with someone in your life. We are so lucky to have mostly healthy, able bodies.
My body is not just a means to feeling attractive or worthy. Seeking attractiveness or worth using my body seem like foreign ideas to me now. My body is a gift. It allows me to experience movement, pleasure, joy, and strength. Eating and exercising are ways to embrace and fully experience my body, not just means to a different body. It's crazy to think about the ways I've taken my body for granted over the years. Even after six months of challenging chemo, my body can get me to work, do yoga, laugh, dance, and so much more. It's capable of so much, even after trauma. I want to shout from the tops of rooftops " Love your bodies while you can. Your bodies are more amazing than you realize!"
We have started calling this new transition for me my "Body Love Revolution". And weirdly enough, that totally sums up how I'm feeling lately. Holy monkeys. Our bodies are amazing tools for health, pleasure, and joy. If you can for me, think of three things you are grateful for about your body and share them with someone in your life. We are so lucky to have mostly healthy, able bodies.
Thursday, March 17, 2016
Moving Forward, Slowly but Surely
I started back at work a little over two weeks ago. The day I started work was the day I stopped wearing caps, a welcome change. My hair is long enough now that I'm warm, it looks semi-decent, and caps kind of hurt my head. Going back to work has been a huge, somewhat overwhelming transition for me but a wonderful one. My fatigue has been a challenging obstacle but I'm finding ways to manage it. It's such a joy being back with my students and a part of a school community. The transition has had its ups and downs but overall, I feel like I'm right where I'm supposed to be right now.
People keep asking me how I'm doing. I'm not exactly sure how to respond. I'm coping well. I'm slowly moving forward with a new outlook. I'm being very conscious about my diet, exercising, and sleep. I'm doing my best to avoid reading about follicular lymphoma studies. However, trying to integrate this experience and diagnosis into my identity has been a huge challenge. For the last 6 months, cancer has been my identity. It's been what people see when they look at me. It's dictated how I've felt physically and emotionally. It's played a role in all of my interactions with others and entered into every one of my relationships. It's changed how I relate to myself, think about my future, and plan my life. BUT I'm also learning that it isn't ALL of me. I am not just my cancer. While it has dominated my life over these last six months, I'm hoping cancer will be less on my mind, affecting my day-to-day experiences, and part of my relationships. Very slowly, I'm starting to actually feel this shift happening. I have a nice, soft head of hair now, so people don't stare as much or ask tons of questions. I'm experiencing very little side effects, just some fatigue and memory challenges. For the most part, I am in charge of my days. They are no longer being dictated by treatments, news, scans, or trips to the doctor. I make it through some days now without thinking about my cancer or worrying about the future. It's a strange feeling. Part of me wants to put it in a box and never open it again. Another part of me knows that I need to acknowledge and integrate it into my identity in order to move forward. I'd like to make a distinction here. I don't think I will ever move on from this. Putting it behind me doesn't really feel like an option, at least right now. My treatment and diagnosis will continue to affect my identity, my outlook on life, and my relationships; however, I DO plan to keep moving and looking forward.
One question that is still challenging for me is "do you have cancer?" Do I? My understanding is that follicular lymphoma, whether active cancer cells or not, is in my body now and always will be. So how do I respond then? Am I cancer-free? I'm in remission so I guess I'm cancer-free. Sometimes the words and terms can overwhelm me though. Also, as an information-lover, I'm slowly learning that reading and researching my cancer is not actually helpful.
A truth I continue to grapple with is accepting and believing that I did not cause my cancer. This notion is challenging for me to embrace but is critical as I try to move forward
People keep asking me how I'm doing. I'm not exactly sure how to respond. I'm coping well. I'm slowly moving forward with a new outlook. I'm being very conscious about my diet, exercising, and sleep. I'm doing my best to avoid reading about follicular lymphoma studies. However, trying to integrate this experience and diagnosis into my identity has been a huge challenge. For the last 6 months, cancer has been my identity. It's been what people see when they look at me. It's dictated how I've felt physically and emotionally. It's played a role in all of my interactions with others and entered into every one of my relationships. It's changed how I relate to myself, think about my future, and plan my life. BUT I'm also learning that it isn't ALL of me. I am not just my cancer. While it has dominated my life over these last six months, I'm hoping cancer will be less on my mind, affecting my day-to-day experiences, and part of my relationships. Very slowly, I'm starting to actually feel this shift happening. I have a nice, soft head of hair now, so people don't stare as much or ask tons of questions. I'm experiencing very little side effects, just some fatigue and memory challenges. For the most part, I am in charge of my days. They are no longer being dictated by treatments, news, scans, or trips to the doctor. I make it through some days now without thinking about my cancer or worrying about the future. It's a strange feeling. Part of me wants to put it in a box and never open it again. Another part of me knows that I need to acknowledge and integrate it into my identity in order to move forward. I'd like to make a distinction here. I don't think I will ever move on from this. Putting it behind me doesn't really feel like an option, at least right now. My treatment and diagnosis will continue to affect my identity, my outlook on life, and my relationships; however, I DO plan to keep moving and looking forward.
One question that is still challenging for me is "do you have cancer?" Do I? My understanding is that follicular lymphoma, whether active cancer cells or not, is in my body now and always will be. So how do I respond then? Am I cancer-free? I'm in remission so I guess I'm cancer-free. Sometimes the words and terms can overwhelm me though. Also, as an information-lover, I'm slowly learning that reading and researching my cancer is not actually helpful.
A truth I continue to grapple with is accepting and believing that I did not cause my cancer. This notion is challenging for me to embrace but is critical as I try to move forward
My Unwelcome Visitor and My Mantra
I'm done with treatment. Being done has bought joys and challenges along with it. I find myself getting caught up in worrying about the future, coming transitions, life expectancy statistics, my trauma, the past, and my fears. Often my worrying and anxiety bring a visitor along with them. An unwelcome visitor. When this visitor appears at my door, I usually try to run away or fight her off. I'm scared of her. Scared of my history with her and scared of how she makes me feel. However, with my therapist's help, I decided to invite my visitor in for tea. I sat down with her and tried to listen to what she had to tell me. She came with a purpose. My visitor came to tell me that I needed to slow down. Embrace the moments and let go of the "what ifs". My life is now, so that's where I should be living. This visitor's name is depression. She's a shameful visitor but usually has important messages to tell me if I'm willing to listen. It's very common for depression to visit cancer patients, especially during their post-treatment period. It's a time that is fraught with worries and reliving of the recent trauma. This visitor has since departed and has left me feeling very hopeful as I take time to breathe, connect, and find joy.
Truthfully, I feel very ashamed that depression has been a part of my cancer journey, especially post-treatment. It feels like I should just be so happy that I survived and am in remission. However, I know that I can't control my depression but I can manage how I respond to it. Luckily, Janelle and I have an amazing social worker at Dana-Farber who has helped us re-frame how to cope and explore my relationship with depression, shame, and cancer as a part of my identity.
Truthfully, I feel very ashamed that depression has been a part of my cancer journey, especially post-treatment. It feels like I should just be so happy that I survived and am in remission. However, I know that I can't control my depression but I can manage how I respond to it. Luckily, Janelle and I have an amazing social worker at Dana-Farber who has helped us re-frame how to cope and explore my relationship with depression, shame, and cancer as a part of my identity.
Recently, a mantra has really helped me focus on living in present. During yoga class last month, we were asked to visualize our greatest hope. As I was visualizing my greatest hope, being healthy, I was told to imagine it was already true and say my intention in the present "today I am healthy". In doing so, I realized that this is ALREADY true. Today, I am healthy. While I can't predict my health of tomorrow, I know that today I am healthy. This mantra now sits on a post-it next to my bed. Every day I'm reminded that I'm healthy today and that's all that matters.
More to come soon about returning to work. I will try to keep writing because it definitely grounds me and reminds me of important truths.
More to come soon about returning to work. I will try to keep writing because it definitely grounds me and reminds me of important truths.
Thursday, January 21, 2016
We can do hard things. Also, I need your help!
Last night, I attended to the young adult support group at Dana-Farber for the first time. Janelle accompanied me, as primary support people are invited to come to the second meeting of every month. My heart was beating very fast on the car ride there. I haven't been back to Dana-Farber since my last treatment and it felt scary. The group turned out to be full of wonderful people all battling different cancers and in different phases of treatment or recovery. Being there was painful and heart-breaking. I had to listen to horrible stories of lives shattered by cancer. But it was also full of hope, support, and kinship. Here are people that live life every day, even when cancer makes it challenging. So while I felt broken down by the fear and uncertainty cancer has brought into so many lives, I also felt built up by the courage and hope of my peers. We do hard things every day. All of us. Sometimes it's good to think about those things and remember that we can get through the other hard things coming our way.
It's been helpful to think about some of the hard things I've already made it through so I can see my own strength on days I feel depleted of it.
In the last six months, I have:
1. Listened to a cancer diagnosis by myself on the phone at work.
2. Told my parents and friends that I have cancer.
3. Told my students that I have cancer.
4. Got a painful bone marrow biopsy.
5. Made it through 6 rounds of chemotherapy.
6. Made it through countless blood draws and IV placements.
7. Drank water - this may not seem like a big feat but I can't even describe how horrible water has tasted for the last five months. It's finally starting to taste refreshing again.
8. Found hope and light on dark nights and during challenging moments.
9. Had my beautiful curls shaved off.
10. Met with a fertility specialist at the age of 27 to talk about the likelihood of conceiving someday.
11. Kept dreaming.
It's amazing to think about all of the hard things people do EVERY day. Not just people with cancer but everyone. Every single person can create his/her own "hard things" list. We all should look at our lists often. These lists illustrate our strength and bravery. We can do hard things, sometimes we just need a reminder.
One of the best and most powerful reminders of my strength and community over these last five months has been the bird socks. I felt stronger and more connected with every picture or message sent from someone wearing the bird socks. The bird socks completely changed my cancer journey. They gave me a feeling of being surrounded by love and support every treatment. Over Christmas, I walked into two family events (Janelle's cousin's and then my family reunion), where everyone in the room was wearing the bird socks. When I say "everyone", I mean over twenty people at both events. I was completely blown away. During these last five months, I've craved tangible proof that I am not alone and that I'm loved and supported. The bird socks have given me that proof and so much more.
Ever since I finished treatment, I've been thinking about how I can convey this message of "we can do hard things" to newly diagnosed young adult cancer patients at Dana-Farber. I have such an amazing community of people that remind me daily that I can face and beat any challenge I encounter. In a small way, I hope to be part of other patients' communities, conveying the same message to them. After brainstorming with Janelle and getting my idea approved by the young adult program at Dana-Farber, I'd like to share it here. Also, I need your help.
Bird socks. I'm going to donate as many bird socks as possible to the Dana-Farber Young Adult Program. Therefore, young adults receiving new diagnoses in the next couple of months will get a pair of bird socks and a letter from me telling them that: people care, they have a community behind them, and they can do hard things. Obviously, if I could afford to buy hundreds of pairs of bird socks myself, I would. But I can't. So that's where you all come in. If you feel so inclined, would you purchase a pair of bird socks that I can donate to Dana-Farber? I going to try to collect as many pairs as I can in the next couple of weeks. Then, I will give them to the Young Adult Program to distribute to new patients. It completely breaks my heart that every day more people find out that they have cancer. I just have to do something to make them feel less alone. The bird socks changed my cancer journey so I can only hope they will make others smile, if nothing else.
If you are local, you can buy the bird socks at Brookline Booksmith or On Centre. If you are not local you can buy them on Amazon here. You can have the socks shipped to my apartment or you can give them to me in person; however, I'm not going to post my address online. If you need my address, feel free to email or Facebook message me. Also, feel free to get the gray, turquoise, or multi-color bird socks. All bird socks are welcome! I can't thank you all enough.
Also, I have my post-treatment PET scan on February 19th. If you could all wear your bird socks, I would greatly appreciate it. We're hoping for a dark scan and smaller nodes. Thank you.
It's been helpful to think about some of the hard things I've already made it through so I can see my own strength on days I feel depleted of it.
In the last six months, I have:
1. Listened to a cancer diagnosis by myself on the phone at work.
2. Told my parents and friends that I have cancer.
3. Told my students that I have cancer.
4. Got a painful bone marrow biopsy.
5. Made it through 6 rounds of chemotherapy.
6. Made it through countless blood draws and IV placements.
7. Drank water - this may not seem like a big feat but I can't even describe how horrible water has tasted for the last five months. It's finally starting to taste refreshing again.
8. Found hope and light on dark nights and during challenging moments.
9. Had my beautiful curls shaved off.
10. Met with a fertility specialist at the age of 27 to talk about the likelihood of conceiving someday.
11. Kept dreaming.
It's amazing to think about all of the hard things people do EVERY day. Not just people with cancer but everyone. Every single person can create his/her own "hard things" list. We all should look at our lists often. These lists illustrate our strength and bravery. We can do hard things, sometimes we just need a reminder.
One of the best and most powerful reminders of my strength and community over these last five months has been the bird socks. I felt stronger and more connected with every picture or message sent from someone wearing the bird socks. The bird socks completely changed my cancer journey. They gave me a feeling of being surrounded by love and support every treatment. Over Christmas, I walked into two family events (Janelle's cousin's and then my family reunion), where everyone in the room was wearing the bird socks. When I say "everyone", I mean over twenty people at both events. I was completely blown away. During these last five months, I've craved tangible proof that I am not alone and that I'm loved and supported. The bird socks have given me that proof and so much more.
Ever since I finished treatment, I've been thinking about how I can convey this message of "we can do hard things" to newly diagnosed young adult cancer patients at Dana-Farber. I have such an amazing community of people that remind me daily that I can face and beat any challenge I encounter. In a small way, I hope to be part of other patients' communities, conveying the same message to them. After brainstorming with Janelle and getting my idea approved by the young adult program at Dana-Farber, I'd like to share it here. Also, I need your help.
Bird socks. I'm going to donate as many bird socks as possible to the Dana-Farber Young Adult Program. Therefore, young adults receiving new diagnoses in the next couple of months will get a pair of bird socks and a letter from me telling them that: people care, they have a community behind them, and they can do hard things. Obviously, if I could afford to buy hundreds of pairs of bird socks myself, I would. But I can't. So that's where you all come in. If you feel so inclined, would you purchase a pair of bird socks that I can donate to Dana-Farber? I going to try to collect as many pairs as I can in the next couple of weeks. Then, I will give them to the Young Adult Program to distribute to new patients. It completely breaks my heart that every day more people find out that they have cancer. I just have to do something to make them feel less alone. The bird socks changed my cancer journey so I can only hope they will make others smile, if nothing else.
If you are local, you can buy the bird socks at Brookline Booksmith or On Centre. If you are not local you can buy them on Amazon here. You can have the socks shipped to my apartment or you can give them to me in person; however, I'm not going to post my address online. If you need my address, feel free to email or Facebook message me. Also, feel free to get the gray, turquoise, or multi-color bird socks. All bird socks are welcome! I can't thank you all enough.
Also, I have my post-treatment PET scan on February 19th. If you could all wear your bird socks, I would greatly appreciate it. We're hoping for a dark scan and smaller nodes. Thank you.
Friday, January 8, 2016
Terrified of More But Filled with Sunshine
I started writing this a couple of days ago but I didn't want to post it yet because it didn't feel complete. Now I know why. It was missing the sunflower part. So I've added to it. Now it's ready.
Today I dropped my mom off at the airport for the last time (in the foreseeable future) and I felt a bit sad and lonely. When I got home, I sat down in my living room and looked around. We have little twinkle lights on our mantle with a Buddha surrounded by rocks from Westport I collected with my mom. There are pussy willow lights from my new "in-laws" and paintings from Alaska and Ecuador from close friends. There are engagement cards from our community hanging from purple yarn above our fireplace. There is a beautiful drawing celebrating our engagement and some of our favorite inspirational books sitting on our bookshelf. Then, there is this amazing jar sitting on top of that bookshelf. It's my "Jar of Sunshine". Six of my closest friends put together this amazing jar that I received the night before my last treatment filled with with 365 pieces of sunshine - cards, little gifts, pictures, quotes from my favorite books and movies, inspirational quotes, gift cards, and love. Every day in 2016, they guaranteed that I would feel love in a tangible way. I've rarely needed to feel love or sunshine in a tangible way, like on a piece of paper or in an actual picture. But today I needed it. I needed to know that even as all these transitions happen and my life starts moving towards a "new normal"-I have my people. I will always have my people. Then, my afternoon was filled with three phone calls from dear friends. I felt so strange about writing the post below because I felt like it wasn't fully me, it didn't have my hopeful heart in it. I am not always joyous or grateful or happy but my heart usually has hope that better days are ahead. And they are. Today proved it. So even though I'm terrified for what is to come, today I am filled with sunshine. Also, watch this. This is what I'm talking about when I think of my people.
Post from earlier this week: I've been terrified to write since I finished my last treatment because so much has been stirring in me since then. I wasn't sure what would surface. So much processing has started. It feels like so many endings and beginnings have come and gone in just a week. I made it through my last low period, last oral thrush mouth wash, last nerve pains (hopefully), last prednisone mania episodes, and so on. But I've also had my first flashbacks, worries about returning to work, and post-treatment anxiety.
I haven't ever thought much about trauma in relation to my life. I've thought about it in respect to my students' lives and the lives of countless people around the world, but never my own. Now it feels present in my life. I feel like pieces of myself were taken from me with my cancer diagnosis and treatment. Pieces relating to my security, understanding of the world, anxiety, gratitude, health, and hope. These missing pieces have left me with a new, fresh lens for which I am grateful. However, I still miss the way I used to be able to view and navigate the world. I miss not worrying about finances or life expectancy all the time. I miss not worrying about every pain in my body. I look back on my former self and feel envious of the carefree life she lived. I don't know if I appreciated it enough back then, although I guess it doesn't matter now.
I'm nervous about going out into the world as this "new" Anna. A person who needs to be more conscious of the money she spends on chai tea, cards, and books and more cognizant of whether the food she buys and eats is organic and more aware of the chemicals used around her and more gentle with herself when concentrating is hard and more mindful of having healthy sleep and exercise habits and more vigilant about germs and just more. It sounds exhausting. All of this more. My treatment bubble gave me time to just be. To wake up and plan my day based on how I was feeling. It's almost over though. Pretty soon, I'll feel pretty good., which is wonderful, don't get me wrong. I'll be fatigued, have low energy, trouble concentrating, and anxiety. But I will be able to plan out my days in advance and schedule dinners, yoga, and activities with friends knowing that it is unlikely an episode of mania, or mouth sores, or nausea will ruin it. Weirdly, it feels terrifying to have that freedom. To no longer have to live in the moment or the day. To think beyond the next 3 or 21 days. Sometimes life's gifts are terrifying.
Today I dropped my mom off at the airport for the last time (in the foreseeable future) and I felt a bit sad and lonely. When I got home, I sat down in my living room and looked around. We have little twinkle lights on our mantle with a Buddha surrounded by rocks from Westport I collected with my mom. There are pussy willow lights from my new "in-laws" and paintings from Alaska and Ecuador from close friends. There are engagement cards from our community hanging from purple yarn above our fireplace. There is a beautiful drawing celebrating our engagement and some of our favorite inspirational books sitting on our bookshelf. Then, there is this amazing jar sitting on top of that bookshelf. It's my "Jar of Sunshine". Six of my closest friends put together this amazing jar that I received the night before my last treatment filled with with 365 pieces of sunshine - cards, little gifts, pictures, quotes from my favorite books and movies, inspirational quotes, gift cards, and love. Every day in 2016, they guaranteed that I would feel love in a tangible way. I've rarely needed to feel love or sunshine in a tangible way, like on a piece of paper or in an actual picture. But today I needed it. I needed to know that even as all these transitions happen and my life starts moving towards a "new normal"-I have my people. I will always have my people. Then, my afternoon was filled with three phone calls from dear friends. I felt so strange about writing the post below because I felt like it wasn't fully me, it didn't have my hopeful heart in it. I am not always joyous or grateful or happy but my heart usually has hope that better days are ahead. And they are. Today proved it. So even though I'm terrified for what is to come, today I am filled with sunshine. Also, watch this. This is what I'm talking about when I think of my people.
Post from earlier this week: I've been terrified to write since I finished my last treatment because so much has been stirring in me since then. I wasn't sure what would surface. So much processing has started. It feels like so many endings and beginnings have come and gone in just a week. I made it through my last low period, last oral thrush mouth wash, last nerve pains (hopefully), last prednisone mania episodes, and so on. But I've also had my first flashbacks, worries about returning to work, and post-treatment anxiety.
I haven't ever thought much about trauma in relation to my life. I've thought about it in respect to my students' lives and the lives of countless people around the world, but never my own. Now it feels present in my life. I feel like pieces of myself were taken from me with my cancer diagnosis and treatment. Pieces relating to my security, understanding of the world, anxiety, gratitude, health, and hope. These missing pieces have left me with a new, fresh lens for which I am grateful. However, I still miss the way I used to be able to view and navigate the world. I miss not worrying about finances or life expectancy all the time. I miss not worrying about every pain in my body. I look back on my former self and feel envious of the carefree life she lived. I don't know if I appreciated it enough back then, although I guess it doesn't matter now.
I'm nervous about going out into the world as this "new" Anna. A person who needs to be more conscious of the money she spends on chai tea, cards, and books and more cognizant of whether the food she buys and eats is organic and more aware of the chemicals used around her and more gentle with herself when concentrating is hard and more mindful of having healthy sleep and exercise habits and more vigilant about germs and just more. It sounds exhausting. All of this more. My treatment bubble gave me time to just be. To wake up and plan my day based on how I was feeling. It's almost over though. Pretty soon, I'll feel pretty good., which is wonderful, don't get me wrong. I'll be fatigued, have low energy, trouble concentrating, and anxiety. But I will be able to plan out my days in advance and schedule dinners, yoga, and activities with friends knowing that it is unlikely an episode of mania, or mouth sores, or nausea will ruin it. Weirdly, it feels terrifying to have that freedom. To no longer have to live in the moment or the day. To think beyond the next 3 or 21 days. Sometimes life's gifts are terrifying.
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