Celebrating My Second Re-Birthday

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Celebrating My Second Re-Birthday: 15 Lessons Learned on Surviving and Thriving after a Bone Marrow Transplant

Presenter: Nancy Fichtman Dana, PhD, survivor of a bone marrow/stem cell transplant for mantle cell lymphoma

May 22, 2024

Presentation is 43 minutes long, followed by 17 minutes of Q& A

Summary

Nancy Dana underwent a stem cell transplant after being diagnosed with Mantle Cell Lymphoma.  In this video, she shares  15 helpful lessons she learned about preparing for a transplant, making the hospital stay as comfortable as possible, and strategies for recovering and approaching life after transplant.

Key Points

• It’s important to prepare both yourself and your caregiver for the transplant experience that lies ahead.
• Developing and sticking to a daily routine that includes soothing activities can make the hospital stay more pleasant.
• After transplant, lean into life.  Create a healing plan and expect bumps in the road.

Highlights

(05:25): Reaching out and asking for what you need. People want to help and can be a source of strength.

(07:27): There are many ways to create a long-term communication plan to keep your family, friends and colleagues up-to-date on your progress and what you may need from them at any given time.

(08:41): Taking care of your caregiver is an important and integral part of your own care.

(09:47): Consulting a therapist who understands the transplant experience can be invaluable for both the patient and caregiver.

(10:52): Mental and physical conditioning prior to transplant, including walking, meditating and tapping into the power of music and other creative arts, are great ways to empower yourself to get through the challenging times ahead.

(19:55): During your hospital stay, focus on actions to help you stay as comfortable as possible, like embracing your new ‘no-hair’ look and decorating your hospital room.

(24:24): Establish a daily routine to make the time go faster and keep track of milestones to track your progress.

(27:50): After transplant, acknowledge that your body’s been through – and is still going through – a lot, so be kind, gentle and patient with yourself.

(28:46): Reading can be very beneficial in helping you move through the transition from cancer patient to cancer survivor.

(37:24): How to create a Healing Plan post-transplant.

Transcript of Presentation

(00:02): [Michala O’Brien]: Speaker Introduction. Welcome to today's webinar from BMT InfoNet, “Celebrating My Second Re-Birthday: 15 Lessons Learned on Surviving and Thriving after a Bone Marrow Transplant.”

(00:14): My name is Michala O’Brien and I will be your moderator for this session. It's my pleasure to introduce you to today's speaker, Nancy Dana. Ms. Dana is Professor of Education in the School of Teaching and Learning at the University of Florida. In 2021, she was diagnosed with mantle cell lymphoma, and later that year, she underwent an autologous stem cell transplant at the University of Florida Shands Hospital. Nancy will share with us today the lessons she learned about surviving and thriving after transplant. Please join me in welcoming Nancy Dana.

(00:49): [Nancy Dana]: Nancy Dana’s Transplant History. Hi everyone. It's an honor to share my bone marrow transplant experience with you today. On June 27th, I'll celebrate my second re-birthday, two years since my transplant day. So I appropriately titled my talk, “Celebrating My Second Re-Birthday: 15 Lessons Learned on Surviving and Thriving after Bone Marrow Transplant.”

(01:26): So, first, a little bit about me. My BMT story officially began on New Year's Eve day, December 31st, 2021. I went out on my daily three-mile run, fell and broke my arm in two places. I was treated at the ER, and a couple of days later, began developing abdominal swelling and pain. I thought I also bruised a rib in the fall so I waited a couple of weeks, thinking it would resolve itself. Well, it didn't, so I was sent for an abdominal scan. My primary care physician called less than 10 minutes after I returned home and she said, "Nancy, your scan did show something, but interestingly, it's not related to your fall: Your spleen is about three times the size of a normal spleen."

(02:19): After blood work revealing an extremely high white blood cell count, chronic lymphocytic leukemia (CLL) – a much less aggressive form of blood cancer than what I was eventually diagnosed with – was suspected, so I was sent to an oncologist to confirm CLL. Further testing led to a change in diagnosis to mantle cell lymphoma, a highly aggressive blood cancer that required a highly aggressive treatment plan, including four rounds of in-hospital chemo requiring one week in the hospital, followed by two weeks home for rest and recovery – and that was called R-Hyper CVAD – and an autologous bone marrow transplant. I entered the hospital for my first chemo treatment in early February 2022, finishing all four rounds in May, at which time I was evaluated for transplant and entered the hospital for the BMT on June 21st. With the actual transplant, my second birthday occurring on June 27th.

(03:26): I came home from the hospital in mid-July 2022 and have been recovering, surviving, and I believe even thriving ever since. As I approached the celebration of my second re-birthday, I reflected back on my cancer journey to date and wanted to share with those facing, recovering from, and surviving after bone marrow transplant some lessons I learned from my experience.

(3:55) For the purposes of this talk, I divided the 15 lessons I distilled from my experience into three categories: preparing for transplant, experiencing transplant, and living after transplant.

(04:12): The nature of my lessons are pretty basic, but what I hope to do in this presentation is package many of the aspects of my experience that in hindsight, as I prepare to celebrate my second re-birthday, were really essential in helping my BMT journey go as smoothly as possible. I share these lessons not so that others either facing, recovering from or surviving BMT might do the exact same things I did, as everyone's experience is different, but rather to simply inspire ideas and opportunities for fellow BMT patients and survivors to chart a course for their own journey through preparing for, experiencing, and living after transplant.

(05:03): Six lessons about preparing for transplant.. Let's get started with the first category of lessons: Preparing for transplant. Preparing for transplant lessons focus on actions my husband, Tom Dana, and I took to lay the foundations for the challenges of cancer treatment and transplant. There are six lessons in this category, beginning with…

(05:25): Lesson 1: Reach out and tell others what you need. The day my oncologist told me that my diagnosis had been changed to mantle cell lymphoma – and that meant four rounds of receiving inpatient chemo, a bone marrow transplant, and three years of maintenance therapy – I was shocked and devastated, of course. But as the initial shock and all kinds of emotions moved through me, I started developing a to-do list to get ready for treatment, which you see on this slide. That to-do list quickly evolved into listing the people I wanted to notify to let them know what Tom and I were facing.

(06:09): For me, I wanted to let all my family, friends and colleagues know about my cancer and ask for their support. In the initial phone calls, emails, and text messages I made to notify people about the cancer journey I was beginning, I asked first for what I needed most at that time: Their thoughts, and prayers. I also told them as I went through treatment I would love to receive cards, emails, and text messages. I knew that knowing others were thinking of and praying for me would give me strength. I even assigned my family, friends and colleagues a new name: The Dana support army. And I had a few different generals that included my best friend and my sister-in-law, who had different roles. Very early in my cancer journey, Tom and I learned that people really did want to help, and it was okay to reach out and ask for what we needed, whether that be thoughts and prayers, cards, meals, visits, transportation help, grocery or prescription pickups, someone to listen, or sometimes just to respect the time and privacy we needed to process what we were facing together.

(07:27): Lesson 2: Develop a Long-term Communication Plan. This leads to lesson number 2: Develop a long-term communication plan. While your family, friends and colleagues all want to help, they also are anxious to know how you are doing and how their support can evolve as your treatment does. Keeping your support army up-to-date could be a full-time job in itself, and draining as you share the same updates over and over with different people. For that reason, we found it useful to develop a communication plan, and at the advice of a colleague chose to do this through CaringBridge. CaringBridge is a free and easy online website for sharing health updates with family and friends. You see my home page on this slide. CaringBridge worked great for us, but of course there are many ways you can communicate: phone chains, Facebook or Instagram updates, group text or emails, to name a few. Whatever method works for you, it will really help your caregiver not drain too much energy on communicating with others so they can focus on you.

(08:41): Lesson 3: Take Care of Your Caregiver. Which brings us to lesson number 3: Take care of your caregiver. If you've ever flown, you are aware that when flight attendants give safety instructions before takeoff, they always say if oxygen masks are needed and you are traveling with a child or passenger that needs assistance, put on your own mask before assisting others. Of course they share this safety tip as you can't help others if you don't take care of yourself first. We leaned into this oxygen mask metaphor to be sure we were taking care of Tom at the start of my cancer journey. Tom has a long-term neurological condition, which he takes medication for, and stress can often trigger a flare. With this in mind, a few days after my diagnosis, we reached out to his neurologist to let her know what was ahead for us. He set up a visit with her for a check-in and check-up, as well as with our primary care provider.

(09:47): We also found a therapist, Dr. Michelle Bishop, who specialized in working with cancer patients and survivors in general, and bone marrow transplant recipients in particular, and who also had research expertise in the caregiving role. Time spent with a therapist specializing in BMT care was invaluable to us. So this is a good time to give a shout-out to BMT InfoNet's free searchable Directory of Mental Health Practitioners with BMT experience. Tom had several appointments with Michelle to discuss and process his role in my cancer journey, and the array of feelings that materialize when your loved one is diagnosed with cancer. Although I had little energy to devote to therapy as I began my treatment, we also did a couple of sessions together, and I did a couple telehealth sessions alone with Michelle as I neared my transplant date.

(10:52): Lesson 4: Condition Mentally and Physically. Leading to lesson number 4: Condition mentally and physically. In the couple sessions I had with Michelle leading up to my transplant, she was able to coach me in preparation by sharing resources such as healthjourneys.com where I found resources for meditation, some specific to the cancer and bone marrow transplant experience. She also suggested Headspace, an app you could try for free that offers meditation and mindfulness tools. I began practicing meditation exercises daily that I could use during bone marrow transplant as a tool to get through some of the more challenging times I feared. Practicing meditation felt empowering, I was doing something to get ready for the unknown. I also walked every day leading up to my transplant. Even if it wasn't fast or far, it helped me feel like I was getting into the best possible physical condition for the transplant ahead that I knew would be physically and mentally grueling on my body. Just like training for a marathon, a run one knows will be physically and mentally grueling, this gave me a feeling of “I can do this.” That feeling was also fostered by music.

(12:24): Lesson 5: Tap into Music and other Creative Arts. Leading to lesson number 5: tap into music and other creative arts. Also to prepare for my chemo rounds and bone marrow transplant, I created this "I Got This" playlist that I would listen to at least once a day as I showered for the day ahead, on one of my conditioning walks or just as I rested. Some examples of my music choices included Let's Get It Started by Black Eyed Peas, an energetic song that helped propel me into the beginning of each treatment with positive energy; I Am Woman, the '70s hit by Helen Reddy with the lyrics "If I have to, I can face anything." and Roar, the Katy Perry hit boasting the words "I am a champion." These lyrics helped me envision the finish line of my treatment.

(13:27): In addition to music, coloring also became a soothing practice, both prior to and during the time I was receiving treatment. The images on this slide are from a cancer adult coloring book gifted to me by a friend. Sometimes I would listen to my music as I colored. This combination of music and art unleashed a feeling of confidence in myself and my ability to fight my disease. In addition to listening to music and coloring myself, I would also select a song from my I got this playlist for each milestone in my treatment and asked my friends and family to play it on the day of that treatment milestone through a message shared on my CaringBridge site. This led to people sending me videos of them singing my song or pictures of the song coming up on the radio. So for example, on this slide, you see a video of my niece, Allie, sent to me via text the morning I was to report to the hospital for my first round of treatment. The video is of Allie and her family singing and dancing to Black Eyed Peas' Let's Get It Started.

(14:49): I received similar videos, texted or emailed to me, of friends and colleagues singing my songs. Sometimes I'd also get a text that said something like, "Hey, Nancy, OMG, look what song came on the radio as I was driving today." On this slide, you see one of the pictures texted to me of Tom Petty's I Won't Back Down, the song I asked my support army to play as I transitioned from my third to fourth chemo treatment. Asking my friends, family and colleagues to play particular songs from my playlist at particular times to represent various treatment milestones provided a simple and easily accomplished action to answer the question Tom and I received so frequently from members of our support army, "How can I help?"

(15:47): A quote from one of my CaringBridge entries as I prepared to enter the hospital for transplant: "I've spent the days since stem cell collection preparing physically and mentally for this next phase. I feel strong and ready, but also just a little bit scared for this most intense part of my treatment plan ahead. If you'd like, this coming Tuesday, please help me feel brave by playing the song Brave sung by Sara Bareilles. While the verse lyrics don't fit, the simple refrain certainly does: "I just want to see you be brave." Requests such as these enabled me to feel the presence of everyone cheering me on.

(16:36): Lesson 6: Write. While writing can be considered a creative art, I made this its own lesson because of the centrality it played in my experience. On a trip to TJ Maxx to select some comfortable hospital clothes for me, my daughter arrived home with both some new comfy clothing and the journal you see pictured on this slide. I used it to write about my experience. Journaling served as a creative outlet for so many of my emotions and to productively channel the fear I was feeling.

(17:15): For example, on this slide, you see my first journal entry, composed one day before I was admitted to the hospital for my first chemo treatment. This entry took the form of a love letter to my spleen for working so hard to capture my cancerous white blood cells: "Dear Spleen, thank you so much for the hard, hard work you have been doing. I am grateful to you. I am writing to let you know that support and reinforcement will be on its way to you tomorrow. I know how much you will appreciate this and I appreciate you continuing to work so hard to teach those nasty white blood cells a lesson. They have absolutely no business in our body, and working together, we are going to smash those little suckers to smithereens. With love and gratitude for your support, Nancy." It's important to note that composing entries to update others on my CaringBridge journal as exemplified in the previous slide was also a form of writing that was really therapeutic. And you don't have to write long or creative journal entries like the examples I've shared so far to profit from the benefits of writing.

(18:39): Another form my writing took was in keeping a simple calendar where I noted major milestones, special moments Tom and I experienced, and visits and/or packages we received from people. My best friend also sent me a gratitude journal shortly after I came home from the hospital after transplant. You can see here this gratitude journal has just three blank lines to fill in each day to note three things you are grateful for. I started doing this every morning during initial recovery from my transplant and have kept it up to this day. It takes me under a minute each morning and really helps get my day off to a great start. These first six lessons conclude my preparing for transplant reflection.

(19:31): Experiencing Transplant. So let's turn now to the second category of lessons: Experiencing transplant. Experiencing transplant lessons focus on actions I took to help me stay as comfortable as possible leading into and during my hospital stay. There are four lessons in this category, beginning with…

(19:55) Lesson 7: Embrace Your New Look. The chemo regimen that is a part of bone marrow transplant will cause your hair to fall out. Because I had chemo prior to my bone marrow transplant, I lost my hair early in the process. Knowing my hair would fall out from treatment, I prepared for and took charge rather than waiting for it to happen gradually. Before my cancer diagnosis, I wore a bob shoulder-length hairstyle. So my first step in embracing my new look happened before I even received my first chemo treatment. I had my stylist cut my hair short, as you see in this first picture. It was fun to have a new hairstyle I could sport for a few weeks before I began to lose my hair, and when the process did start, it would make it easier to transition to my no-hair look.

(20:54): About two weeks after my first chemo treatment was when I noticed my hair beginning to fall out, and I declared that day my no-hair transition day. Tom and I created an upbeat tone by going to a local store to purchase a University of Florida cap – the institution where we work – as I had decided that would be something I'd like to have as an option to wear once I had no hair, in addition to several beautiful headscarves I received as gifts. After our outing, we came home and watched the UF. March Madness basketball game on TV, and when it was over, we proceeded to our backyard, where Tom shaved my head, followed by a picture taking session. I texted several pictures to my children so they would be comfortable with my new look before seeing me in person. I also posted pictures on my CaringBridge site with a journal entry I entitled, “Declaring Go Bald and Beautiful Day.”

(21:58): For me, taking control of my hair loss by deciding when and how it would happen rather than waiting for it to happen in a painstakingly gradual manner –felt empowering, and one more way to send a message to my cancer that it may be a strong and aggressive disease, but I was stronger and more aggressive in tackling it.

(22:23): Lesson 8: Decorate Your Hospital Room. When it comes time to enter the hospital for your bone marrow transplant, you know you're going to be there quite a while, so it helps to make your hospital room feel a little homey. My BMT hospital stay was three weeks in length, and the first thing I wanted to be sure to have on display was a framed photo of my incredible family, a picture of which you see on this slide alongside a collection of stones, each with its own inspirational word inscribed on it that my son had given me as a gift shortly after my diagnosis.

(23:06): Adorning the family picture on the left-hand corner is one of the green wristbands my sister-in-law purchased and sent to members of the Dana support army to wear in support of my fight with lymphoma. So in case you're not familiar with this, green is the color for lymphoma, just like pink is the color for breast cancer. Draped over the right-hand corner of the family picture, you see additional bracelets sent to me with special meanings for strength, hope and healing. Next, I placed pretty butterflies on my hospital window that were sent to me by a wonderful friend for this purpose. And finally, over my hospital chair, I placed the blanket my children had made for me to use during treatment that contained more pictures of my family, the people I love most in this world. During my stay, I also hung some inspirational sayings on the hospital wall provided by one of my first chemo nurses, and some cards and drawings received during my hospitalization. These little pieces of home softened the institutional feel of a hospital room and provided me inspiration each day.

(24:24): Lesson 9: Establish and Try to Keep a Daily Routine. Speaking of each day, this leads to lesson number 9: Establish and try to keep a daily routine. For me, having a bit of a schedule every day helped time move more quickly. You see in this slide an approximation of my daily routine. I'd wake up around 7:30 and turn on the Today Show, staying in bed while I watched until breakfast arrived. After I ate, I would shower and get dressed for the day, followed by some laps around the BMT unit pushing my IV pole beside me, an encouraged activity. 16 laps around the unit equaled a mile, and there was a whiteboard by the nurse's station where you could tally the number of laps you made each day. When I began to feel tired, I returned to my room, relax in my chair, cuddle up with my blanket, and either listen to music, read, color or journal.

(25:27): Before I knew it, lunch would arrive. Then came nap time, followed by a few more afternoon laps or some time on an exercise bike the BMT unit had for patient use. Tom would visit late afternoon and stay through dinner. After he left, I got into bed and watched some TV or a movie before falling asleep for the night.

(25:50): Lesson 10: Mark Time/Milestones. Related to establishing a daily routine is lesson number 10: Mark time/milestones. While having a daily routine helped time move more quickly for me each day, marking time with milestones in some physical way served as a visual reminder of how far I had come. I used my son's gift – the stones with different inspirational words written on them that you saw on the previous slide – to mark each day I'd completed on the BMT unit. As a part of my daily routine, each morning after breakfast, I would walk over to the container of stones on my window sill and select one with a word that I wanted to reflect on that day to place on the window sill outside the container.

(26:43): It wasn't long before the line of stones grew, which provided a visual representation of how much of the transplant I had accomplished. Another marker of milestones was done by the nurses as my transplanted stem cells took hold and started producing new blood cells. It felt great to watch my numbers rise each day, as I knew that meant I was getting closer to going home. Lesson 7 through 10 conclude my experiencing transplant reflections.

(27:20): Living After Transplant. We turn now to the third and final category of lessons, living after transplant. Living after transplant lessons focus on actions I took to transition from transplant patient to transplant survivor, and thrive today as I continue life post-transplant. There are five lessons in this category, beginning with lesson number 11: Be kind, gentle and patient with yourself.

(27:50) Lesson 11: Be Kind, Gentle and Patient with Yourself. This lesson is self-explanatory: You have been through and are continuing to go through a lot. In my first weeks home from the hospital, I literally felt like I was an infant coming home for the first time, as I slept just about as much as a newborn does in their first few weeks of life. My transplant doctor told me to remember that it may be invisible on the outside, but on the inside, your body is working so hard to rebuild. For this reason, I learned to practice self-compassion, to sleep when I needed without trying to fight it and to give my body the time and space that it needed to recover, rebuild and heal.

(28:46): Lesson 12: Read if You are Able and when You are Ready. When you are first discharged from the hospital after your bone marrow transplant, you have frequent checkup visits. But as those visits became further and further apart, a really unsettling feeling came over me as I transitioned from being a cancer patient to a cancer survivor. For so long, I had focused on getting through treatment as a patient, and then all of a sudden my BMT was over, and it hit me like, "What just happened?" To help me move through the transition from cancer patient to cancer survivor, I found reading very beneficial once my chemo fog began to clear and I was able to concentrate on books again. You see some of my favorites on this slide, Between Two Kingdoms: A Memoir of a Life Interrupted is the New York Times bestseller story of Suleika Jaouad, a young woman who was diagnosed with acute myeloid lymphoma shortly after graduating from Princeton in 2010. The book chronicles her many hospitalizations over a four-year period, including her bone marrow transplant, as well as the healing road trip she took after she achieved remission.

(30:18): Similarly, Six Years and Counting: Love, Leukemia, and the Long Road Onward tells the story of a middle-aged man, Peter Gordon, his diagnosis of myelodysplastic syndrome and his bone marrow transplant journey from waiting for a matching donor to the transplant process itself, and all the ups and downs on the after-transplant recovery road. One of my absolute favorite books was the third one you see on this slide, Picking Up the Pieces: Moving Forward and Surviving After Cancer by Sherri Magee and Kathy Scalzo. This book is written for all cancer survivors no matter what kind of cancer you've battled, and as the title entails, provides practical guidelines for how to pick up the pieces of your life after cancer and put them all back together again once treatment finishes. I found the many cancer survivor quotes woven throughout the text insightful and inspirational and the end of chapter exercises extremely beneficial to guide self-reflection as I rebuilt my post-cancer treatment life.

(31:33): The final book on this slide is not a book about cancer at all, but a collection of pieces by a wonderful poet I stumbled upon named Donna Ashworth. Donna writes beautifully about common thoughts and feelings we all experience as humans. I was experiencing an array of feelings post-treatment that often surprised me, and quite honestly, I didn't know how to deal with. I would often label them as bad feelings to have, like being sad about what I'd been through, or being frightened of the cancer returning, or even just feeling how plain sucky it was that the life I knew was suddenly taken away from me.

(32:24): My therapist, Michelle Bishop, helped me understand that these feelings were natural and normal, and it was okay to feel them without judgment. Rather, she suggested I become curious about them instead. While it has taken me time to learn to welcome all feelings with curiosity and compassion rather than judgment, Michelle's advice has served me so well in recovery and survivorship, and is captured so well in many of the poems by Donna Ashworth. Here's just one example of a poem from her book, Wild Hope, to give you an idea of how her work can help you frame and process thoughts and feelings that bubble up after cancer treatment has ended.

(33:16): "Hosting Sad. Sometimes I wake up sad for no reason. And I know, as soon as my eyes open that today, I am sad. I can choose positive thoughts, have a cold shower, run on the treadmill, but I will still be sad. And counting my blessings, on days like this, makes me even more sad. How lucky I am and how tenuous that is. How others are not so blessed and how unfair that is. And I've learned to accept these little bouts of sad, or soul-flu, as I have now come to call them. They are not within my control, this I know. I don't fear them anymore, they can't harm me because I don't become them. I just let my sad in the door and say, 'Hey, how are you, take a seat, but don't stay too long please, I have things to do.'

(34:20): And I rumble along in my mental kitchen, making tea, emptying the dishwasher. And my sad just sits there and just exists, without judgment or acrimony. Just acceptance. I know she is many things you see, other than just sad. She is love, she is grief. She is fear, she is weariness and worry, and really, she puts up with rather a lot in this life. So I give her a cup for tea. And listen to her sorrows, until she's ready to go back outside again. Sometimes I wake up and sad has already let herself in. But I don't scold her for that. She'll go soon. And really, she deserves a warm place every now and again, this world gives her much to bear. Sometimes, I wake up sad. For no reason, and that's okay. PS: when sad is visiting, I look exactly the same. You would never know I'm hosting her…unless you ask."

(35:28): Bonus Lesson 12a. This poem leads to a bonus lesson in addition to the 15 I planned to share with you. So I'm calling this one lesson 12a and it's, be curious about and explore all feelings.

(35:44) Lesson 13: Create a Healing Plan. One way that can be facilitated is by lesson 13: Create a healing plan. I got this idea from the book called Picking Up the Pieces, but I approach it differently than suggested. When I first read about healing plans, I wanted to develop one, but I was stuck – until I recognized I held an unrealistic expectation for the type of healing plan I wanted to develop. Initially, I envisioned developing a list of to-do's I could accomplish and cross out. And when I got to the end of the list, I could declare myself healed and put the cancer experience completely behind me.

(36:32): Working with my therapist, Michelle, however, I realized that healing is not a task to complete before you move on with your life, rather, healing is a process I needed to embrace, letting it weave itself throughout the fabric of my life as I moved on after treatment. For this reason, I organized my plan around five questions I developed that I could live out the answers to. You see how I structured my plan on this slide, a table with three columns: My question, the intention behind me posing this question and actions and behaviors I could implement that would help me live the answer to the question.

(37:24): Questions for Creating a Healing Plan. These are the five questions I developed:

1. In what ways can I assure the amount and intensity of my work life does not interfere with appreciating and living a life of wholeness and meaning beyond work post-cancer?
2. What are some strategies for living life wholly and meaningfully post-cancer to make the most of the time I have left?
3. How do I give back to my body in gratitude for all it has endured throughout cancer treatment?
4. In what ways can I develop a sense of inner-peace post-cancer?
5. And how can I use my cancer for good?
    

Now, while it's great to have a plan, I learned that as a cancer survivor, your plans don't always go as planned.

(38:16): Lesson 14: Expect Bumps in the Recovery Road. So that leads to lesson number 14: Expect bumps in the recovery road. Since my bone marrow transplant, I'll name just a few of the bumps in my recovery road:

1. One, I've experienced relapse scares.
2. Two, I've been hospitalized for an eye infection with zero white blood cells to fight it due to a reaction to my maintenance treatment drug.
3. And three, I experienced some pretty significant complications when my port was removed leading to multiple surgeries and scarring.

Thes examples I just shared are of bigger bumps, but there can be more subtle ones too. For example, sometimes I've been feeling excellent mentally, and then something seemingly little unexpectedly triggers a shift in these feelings and a fairly significant downward slide. Over my almost two years since bone marrow transplant, I've learned to embrace that two steps forward, one step back is still progress, and sometimes, echoing back to lesson 12a, it's okay just to embrace the suck of it all.

(39:33): Lesson 15: Believe in Yourself and Lean into Life. While indeed cancer does suck and life can continue to present us with sucky events even after our treatment is over, the most important lesson I've learned is lesson number 15: Believe in yourself and lean into life. Early in my BMT recovery, this was hard to do, so I borrowed again from the book Picking Up the Pieces and created five belief statements that I wrote on the post-it note you see pictured on this slide.

(40:06): I stuck this note on my bathroom mirror where I would see it every day. "I believe in myself, in my treatment, in my healthcare team, in my body's ability to heal, in my own ability to move forward and deal with both loss and change." Seeing this note each day, memorizing it and repeating it to myself as a mantra helped me internalize the feeling that I was going to be okay. And being okay didn't mean that life was going to go back to being what it once was, but simply that there was life to be lived ahead and it was up to me to make the most of it in all its ups and downs, joys and sorrows, both large and small.

(40:57): Since my bone marrow transplant, both of my children got engaged and were married, the epitome of joy. And since my bone marrow transplant, both my mother-in-law and father-in-law became ill and passed away, the epitome of sorrow. These significant life events helped me realize that both the joys and sorrows of life go on after cancer. And these help you transition from a feeling of ‘cancer is life,’ how you feel when you are going through treatment, to a feeling of ‘cancer is just a part of life.’ I have found this framework to be a healthy mindset for survivorship and leaning back into life again post-BMT. So there you have it, 15 lessons learned with one bonus lesson as well derived from my encounters in preparing for, experiencing, and living after transplant.

(42:04): I want to thank everyone for the opportunity to share my journey and what I've learned along the way with you today, as well as my medical team, every member of the large and mighty Dana support army, my wonderful husband and children, my therapist, and of course, the BMT InfoNet for giving me the opportunity to share my story. The process of creating this presentation as I approached my second re-birthday was healing for me. So perhaps one final additional lesson learned is to find ways to share your own transplant story. For everyone's transplant story is different, but I believe all BMT patients and survivors share a special bond. And I hope that in some way, the 15 lessons learned I derived when I reflected back at the two-year mark might contribute in some way to strengthening this bond. Please feel free to contact me or read more about my journey by visiting my CaringBridge site. I wish you all strength, courage, peace and comfort in wherever you are in your own bone marrow transplant journey. Thank you.

Question and Answer Session

(43:25): [Michala O’Brien]: Thank you, Nancy, for a very inspiring and thoughtful presentation. We will now begin the question and answer session. Our first question is, can you share some tips for self-care? What worked for you, Nancy?

(43:57): [Nancy Dana]: Let's see. Self-care, some simple things, getting a good smelling moisturizer, skin moisturizer that helps you relax. When I felt up to it again, and it took a while to get there, but getting a massage was really helpful for self-care. Slowly getting back to walking again, that was really helpful and meaningful to me. And I guess ultimately for me, self-care was connecting to a therapist. That really helped me process as you saw in the story, that was a really helpful element as well.

(44:47): [Michala O’Brien]: I just wanted to give a shout-out to a couple of our audience members, somebody is celebrating the re-birth or first year rebirth, June 22nd. And then, Nancy, we also have somebody joining from Ireland, so you're reaching over to a different country. And also, a brief reminder to the audience that Nancy had an autologous transplant, and so that's a procedure that uses the patient's stem cells with healthy stem cells from their own body. How did your children deal with your transplant experience? How would you help them?

(45:29): [Nancy Dana]: My children were adults, so I think this answer is going to vary depending on the age of your children, but having adult children was a really important part of this process for me. They were so loving, and kind, and supportive, and I think a lot of that had to do with Tom and I making a pact with each other that we were going to share with them everything. We were not going to sugarcoat things or hold things back, but as a family, we were honest with each other. And also as a family, we said we will make a path that we will share with each other how we're feeling.

(46:21): And that's easier said than done, and it was hard and challenging at times, but I think ironically, living through something like this has brought us closer in many, many ways and helped us all grow, not just in our family love for each other, but has really helped us grow as individuals. And I'm just so proud of my two children and going through something so difficult as seeing a parent have cancer, but embracing that and doing what they can and learning through it as well. And just so also proud of my husband and so grateful that our relationship as a family has just deepened and grown through facing these challenges together.

(47:24): [Michala O’Brien]: How do you manage work pre-transplant and post-transplant?

(47:33): [Nancy Dana]: For me, I was pretty abruptly taken out of my work setting because right after diagnosis, within 10 days, I was in the hospital getting my first chemo treatment, so I wasn't able to work for months before I even went into the transplant. If it's possible for you, I think everybody's situation is going to be different, so for me, talking with my employer and my colleagues were wonderful and my colleagues were so amazingly supportive throughout this whole experience. Being honest with them and letting them know what I could do and to also let them know that there were unknowns and continue to be unknowns so that we could work together on a re-entry plan.

(48:38): And I'm really fortunate I had an awesome experience with re-entry into my workplace. I came back gradually from medical leave, so it wasn't from going 100% on medical leave to back to work. I was able to ease back in by working part-time, and then also reviewing my responsibilities and gradually easing back into them as my recovery continued. So for me, that was really helpful, but everybody is going to be different depending on what their job is, and who their employer is, and who their colleagues are, and how much information you feel comfortable sharing with them.

(49:32): [Michala O’Brien]: How did your treatment and recovery affect your relationship with your spouse?

(49:40): [Nancy Dana]: So, in the reading I've done about cancer, I know that marriages end when you've gone through a cancer experience. I am so fortunate that my spouse and I, I mean honestly, we've always been close, we'll be married 38 years in June, but living this experience together has incredibly deepened the bond that we share with each other. And again, I'm grateful for that because I know that isn't the case with everybody. And I think some of the things that helped, again, is really sitting down and agreeing to be open and honest with each other. There's something I learned about working with Michelle, my therapist, called – now I'm not going to remember the therapy word for it – but protective something, where you don't really want to share with your spouse what you're thinking because you're afraid it might lead them to feel badly or something like that.

(51:06): I think it's called protective buffering. So we actually talked about that and we said, "Okay, we're going to make a pact, we aren't going to buffer each other, we will share what we feel with each other when we feel it." We have great communication skills, so I think that was also helpful. We cry together. There were times I was down and he helped, there were times when it was the opposite, and then there were times when we just embraced how sucky this all was together. But in general, I think open, honest communication, compassion for each other and what you're going through and respecting that you're both going through this journey, one is a patient, one is a caregiver, but they are both really, really hard jobs. So acknowledging that is really, I think, useful and helpful.

(52:17): [Michala O’Brien]: You mentioned Dr. Michelle Bishop, your therapist, how did you find your therapist?

(52:24): [Nancy Dana]: That is such a great question. We didn't know any better at the beginning of all of this, and we kind of stumbled upon Michelle; a colleague of ours shared, “I know someone and I think she specializes in bone marrow transplant, working with people that are going through this,” and we were like, "Really, there's even such a thing?" We had no idea that that even existed. And we reached out to Michelle, and indeed we found out that there is such a thing. And we just stumbled upon it, but that's why in my talk, I gave a shout-out to the BMT InfoNet's searchable directory of mental healthcare practitioners who have cancer and BMT experience.

(53:17): Because I will say, I don't think a therapist is a therapist is a therapist. In this particular case, I think having somebody that understands transplant and understands cancer experience is just invaluable and it adds a layer that really helps. You don't have to explain everything to them because they know exactly what a transplant entails, and they know much of what it's like to experience one. So, I mean, certainly a therapist is great, but I would recommend, if at all possible, using that searchable directory that BMT InfoNet has, unless you have a good friend like we did that happened to know somebody, and try to connect with somebody that has transplant experience.

(54:19): [Michala O’Brien]: Nancy, you mentioned sleep in your slides. How are you sleeping now and can you share any suggestions for sleeping after transplant?

(54:30): [Nancy Dana]: Actually, I'm sleeping pretty well at night. After transplant – I know it's going to be two years – I require more sleep than I ever did. I would say I probably used to average six or seven hours of sleep a night, and now I need around 10. I've heard that that's not unusual. I do sleep pretty well. I do take melatonin, which is just an over-the-counter herb I think it is, so I do take that. And I will share this: I am probably sleeping better now than I ever did in some ways, and I attribute that in part to the hard and good work that I did do with my therapist, because I actually feel that I am more mentally healthy now than I've ever been in my entire life, and I think sometimes it's hard to sleep when you have so many things on your mind. So I think, I don't know, I attribute some of it to my body just needing more sleep so it's going to make it happen and I let it happen, I don't fight it.

(55:51): And I'll say the same thing about naps. I still have a good deal of fatigue. And I don't know if that's 100% from the bone marrow transplant experience, and it may not be because I'm still in therapy. I'm on a maintenance drug, and one of the side effects is fatigue with that as well. So, I have to nap sometimes during the day, and that's not like me at all. But I hope maybe that answers your question. Not fighting sleep when I need it, working through my thoughts and feelings during my waking hours and maybe taking the melatonin at night. And I think having a nighttime routine also helps. Usually I read for a little bit, and then my husband and I like finding a Netflix show or something, that's kind of our routine. We read for a while, and then we watch an episode of something. And then usually I rest for a little bit after that before I go to bed. So the routine I think helps as well.

(57:04): [Michala O’Brien]: We are getting close to the end of the webinar, so this will have to be our last question. Do you still worry that your cancer will return?

(57:19): [Nancy Dana]: Every day. And I will share with you, unfortunately, my disease, mantle cell lymphoma, it's not really worrying if it will return, it's worrying when it will return. My disease right now does not have a cure, so I'm fortunate to be in complete remission. I can be in complete remission for a very long time, but no one really knows for each individual. I am comforted by the fact that when I do relapse, there are treatment options for me to go yonext. So, my plan is to be in remission for a really long time, I hope that's how it goes. Like I said, plans don't always go as you plan them to, but my plan is to be in a remission for a really long time. And when I do relapse, I know I have other treatment plans. But yeah, dealing with that fear of the cancer coming back, that's real, it's always in the back of your mind, and some days are better, sometimes it just really gets to me, and I work through them, I work through those feelings, and try to be rational and reasonable with myself in my thinking about it.

(58:49): [Michala O’Brien]: Thank you so much. With that, we're going to need to end this session, but I would just like to let the audience know, Nancy mentioned the BMT InfoNet Directory of Mental Health Providers, the audience may find that at bmtinfonet.org/mh-directory. I'd like to thank Nancy for her wonderful presentation, and I'd also like to thank the audience for your excellent and thoughtful questions and comments today.