We did it. Summer vacation is finally here. Back in February when I started my temporary position at a middle school, I was filled with anxiety, nerves, and even some regret each day when I left Dan at home and made my way to a brand new job. We needed the money and a sense of some normalcy so we convinced ourselves we'd made the right decision and I put on my brave face and went to work. Fast forward four months and I find myself with new friends, new skills, and a new appreciation for middle schoolers and their sometimes awkward, adolescent ways. I've fallen in love with my school, the teachers, and have enjoyed unique experiences working with the special population of students there.
But now it's summer, and I'm so ready for it. What teacher isn't ready for a few months off after 10 months of hard work? I know the non-teachers reading this are having their annual "Why didn't I become a teacher again?" moment. This summer, Dan and I plan to maximize our time and take advantage of a summer without cancer. I've only been at this whole "working" thing a few summers now and they've always involved the disease in one way or another. We're planning a good, old-fashioned summer full of trips to the pool, beach, mountains, baseball games and surely a few happy hours in between. We are booked up almost every weekend of the summer and plan to enjoy every minute of it.
All is quiet on the medical front. Dan has been acing his weekly blood tests and continues to light up the Lombardi Center every Thursday with his positive attitude and contagious grin. He still has to go weekly because there is always a new symptom/side effect to discuss/assess, but we are hoping to get his visits to every other week in the near future. His GVHD medications continue to change pretty regularly (based on symptoms) and that always seems to affect him in some way. Sometimes he's extra tired, extra rashy, extra achy, extra dry, to which we shrug and encourage his host and the graft to get over themselves and learn to live together once and for all. They still seem to be hashing it out, but we're living a pretty almost normal life in spite of it and doing more and more while thinking about cancer less and less. Since Dan is on so few immunosuppressant drugs these days, there are fewer eating/activity restrictions, so he's enjoyed some sushi, wine, burgers, and also plans to take a dip in the ocean as soon as possible.
Last summer when I packed up my classroom, I had no idea what layed ahead or what my life would be like when I returned to work. Last summer we didn't know if we'd have another one together. Last summer when we got on that plane and flew 3,000 miles away we had no idea what we were about to go through, the odds we'd face, the fear we'd know or the courage we'd muster. Had we known we may not have had the strength. While last summer is a not-so-distant memory, we're looking forward to making very different memories this summer. We are filled with happiness, hope and health. We're almost 8 months post transplant now and getting closer and closer to the one year mark. Every single day Dan's graft does its job is a day closer to using the word cure. Keep the prayers coming that Dan continues to progress through recovery. Cheers to the beginning of a wonderful summer!
Wednesday, June 19, 2013
Thursday, May 30, 2013
Day 212 - ALL Is Well Again
The four weeks of waiting have come and gone and ALL is well again! Our team decided to forgo the follow-up biopsy altogether because Dan's blood work looks great, the numbers are trending normally, and Dan feels better than ever. It is safe to say that since his bloodwork looks good each week that the leukemia is not relapsing at this time. Dan's type of leukemia starts first in the marrow (where they found .1%) and eventually spits out into the bloodstream. The .1% did not multiply and overflow into the bloodstream. No cancer in his bloodstream, no relapse. (Pause for ridiculously huge sigh of relief). I am so happy Dan did not have to endure the pain and suffering of the procedure itself and none of us had to endure the pain and anxiety of waiting for news. We think Dan's graft (donor) is doing her job and eating away any morsels of leukemia she can find. So, thank you, THANK YOU for all of the amped up prayers the last few weeks, the cards, the texts, the emails and the love. We appreciate it, as always.
The GVHD watch is still in full swing, but the medication change to manage the .1% didn't wreak the havoc we feared - at least not yet. Dan continues to consult with his Georgetown team each week and is finding less and less to report. His rashes, dry mouth, and dry skin issues wax and wane, but he's gotten pretty good at managing them after trial and error with many OTC products and prescriptions. His energy is getting better, his strength is returning, and he's finally met his pre-transplant weight. We're still obeying the immunosuppression diet and lifestyle full of hand sanitizer, bleach, food thermometers and excessive laundry, but we're happy to comply when results are so good. The last week or two have been truly inspiring as we make plans for the summer, for Dan to go back to work, for vacations, for family get-togethers, and for date nights. We're so accustomed to penciling plans in and it's exciting for us to imagine using pen. Our dreams may finally become reality as we approach the 4 year anniversary of Dan's diagnosis. We're happy, we're healthy and we're cancer-free. We've recently added a new "first" when Dan got his haircut on day 207 - looking sharp!
We've had a chance to pay it forward the last two weeks as my Aunt Nora makes her way to a successful end to an extremely difficult battle with lung cancer. Last Monday her surgeon removed her entire left lung - and all of the cancer! She has been in the ICU at our hospital-turned-home, Georgetown, and has finally turned a corner to recovery the last few days. She is making steady gains now and we are hopeful she will make a full recovery - and a "new" life, cancer free. My mom has been sleeping on our couch for almost two weeks and has been an amazing caregiver. Dan and I have stood by her side and spent countless hours supporting both of them any way we can. Unfortunately, we know what it's like to have weeks on end enduring long, painful hospital stays, both from a patient and caregiver perspective. Fortunately, we have that perspective that allows us to drop everything and love family first, turn to prayer, challenge our faith, and trust in medicine. It is a gift we've been given and one of the little joys we've discovered since this whole mess started. We plan to use this gift and be for others what they have been for us. A support, a shoulder, a friend, and a partner.
All is well in the Lyons home these days. We are in summer-mode and counting down the days till school's over and summer break begins. I don't carry my cell phone into my classrooms at work anymore and I only call Dan once a day. Dan has become a volunteer at the National Basilica at Catholic U. and is registered for classes at George Washington in the fall. He has accepted a fellowship that will get him in the classroom teaching supply and demand curves to freshmen during their intro to econ course. We are getting glimpses into the old normal. We are non-commital because Dan still has hard days, but the everyday fear is diminishing.
We are finding little joys everywhere.
The GVHD watch is still in full swing, but the medication change to manage the .1% didn't wreak the havoc we feared - at least not yet. Dan continues to consult with his Georgetown team each week and is finding less and less to report. His rashes, dry mouth, and dry skin issues wax and wane, but he's gotten pretty good at managing them after trial and error with many OTC products and prescriptions. His energy is getting better, his strength is returning, and he's finally met his pre-transplant weight. We're still obeying the immunosuppression diet and lifestyle full of hand sanitizer, bleach, food thermometers and excessive laundry, but we're happy to comply when results are so good. The last week or two have been truly inspiring as we make plans for the summer, for Dan to go back to work, for vacations, for family get-togethers, and for date nights. We're so accustomed to penciling plans in and it's exciting for us to imagine using pen. Our dreams may finally become reality as we approach the 4 year anniversary of Dan's diagnosis. We're happy, we're healthy and we're cancer-free. We've recently added a new "first" when Dan got his haircut on day 207 - looking sharp!
We've had a chance to pay it forward the last two weeks as my Aunt Nora makes her way to a successful end to an extremely difficult battle with lung cancer. Last Monday her surgeon removed her entire left lung - and all of the cancer! She has been in the ICU at our hospital-turned-home, Georgetown, and has finally turned a corner to recovery the last few days. She is making steady gains now and we are hopeful she will make a full recovery - and a "new" life, cancer free. My mom has been sleeping on our couch for almost two weeks and has been an amazing caregiver. Dan and I have stood by her side and spent countless hours supporting both of them any way we can. Unfortunately, we know what it's like to have weeks on end enduring long, painful hospital stays, both from a patient and caregiver perspective. Fortunately, we have that perspective that allows us to drop everything and love family first, turn to prayer, challenge our faith, and trust in medicine. It is a gift we've been given and one of the little joys we've discovered since this whole mess started. We plan to use this gift and be for others what they have been for us. A support, a shoulder, a friend, and a partner.
All is well in the Lyons home these days. We are in summer-mode and counting down the days till school's over and summer break begins. I don't carry my cell phone into my classrooms at work anymore and I only call Dan once a day. Dan has become a volunteer at the National Basilica at Catholic U. and is registered for classes at George Washington in the fall. He has accepted a fellowship that will get him in the classroom teaching supply and demand curves to freshmen during their intro to econ course. We are getting glimpses into the old normal. We are non-commital because Dan still has hard days, but the everyday fear is diminishing.
We are finding little joys everywhere.
Wednesday, May 1, 2013
6 months, .1%
I expected to update the blog this week with good news from Dan's 6-month routine bone marrow biopsy. Unfortunately, the news is not so good. We got a phone call last night around 6pm after several days of waiting, wondering, creating "what ifs" in our head, and praying that the biopsy taken last Friday was cancer-free. No news is good news we heard, and The doctor just hasn't had a chance to call we hoped. After entertaining those thoughts we let our minds wander to, It's never taken this long before, something must be wrong, they're coming up with a plan before they call.
Dan's biopsy showed .1% ALL cells. Now, the positive (and what our doctor opened with) is that 99.9% looks beautiful. Normal. Cancer-free. After much deliberation and consultation with the long-term follow-up team in Seattle, our doctors came up with a plan that will hopefully take care of this tiny, tiny amount and get back to 100% normal cells. There will be another biopsy in 4 weeks to see progress. 4 weeks. 4 weeks of waiting, wondering, creating "what ifs" in our head, and praying that the plan makes Dan cancer-free.
I mention immunosuppressant drugs on here a lot. That's because Dan is on a lot of them. Each week, his doses of these medications are monitored and changed based on his blood work and any overt symptoms (e.g., rashes, dry mouth, etc) that suggest graft-versus-host disease (GVHD). GVHD can be very bad. It can be fatal. If GVHD flares badly, there can be life-long effects and on-going complications. To prevent serious GVHD flares, drugs suppress Dan's immune system from attacking his donor so that the two of them get along in the sandbox and the sand stays on the ground. A potential draw-back of this suppression is that something called graft-versus-leukemia effect is also suppressed in turn. Part of Dan's graft/donor's job is to look around in Dan's blood and eat/attack/get rid of any cells that don't look normal. Her cells are normal, Dan's are not, that's the whole point of all this. That's graft-versus-leukemia effect, a good thing, normal donor cells eating abnormal leukemia cells. The post-transplant care really consists a lot of doctors walking a tight rope prescribing enough immunosuppression to keep GVHD at bay while also allowing graft-versus-leukemia effect to take place.
Now that that's out of the way, here is the plan. Dan will stop taking some of his immunosuppression medication for the next four weeks. We will closely monitor for GVHD symptoms as this medication change gives the donor/graft free reigns to fill buckets with sand and throw like wild. We hope that her cells enjoy a tasty feast of leukemia cells and that not one tiny ALL crumb is left. We hope that GVHD is manageable and that Dan handles the medication change okay. We pray that in 4 weeks, we all breathe a ridiculously huge sigh of relief, hug each other, cry together, and celebrate 100% cancer-free.
I can't believe I'm writing this kind of blog again, and I'm deeply saddened to share this news. Yes, we've been in graver situations, and yes, we can do this. We'll continue to find little joys. We'll continue to cherish every second with each other and say I love you a hundred times a day. We'll keep praying for health, for a cure, and for courage. We'll try not to think of what might happen in the future and we'll see each moment for the beauty that it holds. I know we'll get through this. And I know we'll do it with hope, and strength, and in love. I know we'll draw from your prayers, from your cards, emails and texts. We'll feel the love from near and far. We'll do this all like we have been for almost four years. We'll do it because we have to, not because we want to, or because we're good at it. We have no choice. This is happening and cancer came back. Again.
I am off work today and plan to spend it with Danny enjoying the sunshine and his company. He's been feeling great lately so we've been doing more and more "normal" things. We'll fill the next four weeks with "normal" things and not wish any time away. When the next biopsy approaches, we'll worry again. But not until then. We'll begin this new plan and we'll get on with our lives. Please say prayers that we stay strong, that we don't lose faith, that the cancer disappears, and that ALL will be well.
Dan's biopsy showed .1% ALL cells. Now, the positive (and what our doctor opened with) is that 99.9% looks beautiful. Normal. Cancer-free. After much deliberation and consultation with the long-term follow-up team in Seattle, our doctors came up with a plan that will hopefully take care of this tiny, tiny amount and get back to 100% normal cells. There will be another biopsy in 4 weeks to see progress. 4 weeks. 4 weeks of waiting, wondering, creating "what ifs" in our head, and praying that the plan makes Dan cancer-free.
I mention immunosuppressant drugs on here a lot. That's because Dan is on a lot of them. Each week, his doses of these medications are monitored and changed based on his blood work and any overt symptoms (e.g., rashes, dry mouth, etc) that suggest graft-versus-host disease (GVHD). GVHD can be very bad. It can be fatal. If GVHD flares badly, there can be life-long effects and on-going complications. To prevent serious GVHD flares, drugs suppress Dan's immune system from attacking his donor so that the two of them get along in the sandbox and the sand stays on the ground. A potential draw-back of this suppression is that something called graft-versus-leukemia effect is also suppressed in turn. Part of Dan's graft/donor's job is to look around in Dan's blood and eat/attack/get rid of any cells that don't look normal. Her cells are normal, Dan's are not, that's the whole point of all this. That's graft-versus-leukemia effect, a good thing, normal donor cells eating abnormal leukemia cells. The post-transplant care really consists a lot of doctors walking a tight rope prescribing enough immunosuppression to keep GVHD at bay while also allowing graft-versus-leukemia effect to take place.
Now that that's out of the way, here is the plan. Dan will stop taking some of his immunosuppression medication for the next four weeks. We will closely monitor for GVHD symptoms as this medication change gives the donor/graft free reigns to fill buckets with sand and throw like wild. We hope that her cells enjoy a tasty feast of leukemia cells and that not one tiny ALL crumb is left. We hope that GVHD is manageable and that Dan handles the medication change okay. We pray that in 4 weeks, we all breathe a ridiculously huge sigh of relief, hug each other, cry together, and celebrate 100% cancer-free.
I can't believe I'm writing this kind of blog again, and I'm deeply saddened to share this news. Yes, we've been in graver situations, and yes, we can do this. We'll continue to find little joys. We'll continue to cherish every second with each other and say I love you a hundred times a day. We'll keep praying for health, for a cure, and for courage. We'll try not to think of what might happen in the future and we'll see each moment for the beauty that it holds. I know we'll get through this. And I know we'll do it with hope, and strength, and in love. I know we'll draw from your prayers, from your cards, emails and texts. We'll feel the love from near and far. We'll do this all like we have been for almost four years. We'll do it because we have to, not because we want to, or because we're good at it. We have no choice. This is happening and cancer came back. Again.
I am off work today and plan to spend it with Danny enjoying the sunshine and his company. He's been feeling great lately so we've been doing more and more "normal" things. We'll fill the next four weeks with "normal" things and not wish any time away. When the next biopsy approaches, we'll worry again. But not until then. We'll begin this new plan and we'll get on with our lives. Please say prayers that we stay strong, that we don't lose faith, that the cancer disappears, and that ALL will be well.
Thursday, March 28, 2013
Day 150 - Carry On
On this Holy Week in our faith and the one year anniversary of leukemia's return, we remember the day that changed our lives. We vividly recall the minute details from the day that set us on the spiritual journey of a lifetime - a journey filled with fear, sickness, pain, suffering, hope, humility, and love. We have faced our fears, we have challenged our faith, and we have grown stronger because of it. We aren't there yet and the road is long, but we know the value of one day at a time and are beginning to see a future filled with health and happiness - and it looks great.
It was just like any other Tuesday. I had slept in a bit and was getting ready to head to George Washington University later that afternoon for class. The phone rang and I answered - little did I know it would change everything from that point forward. Dr. Broome was on the other line and I immediately heard in the tone of her voice that something was up. She usually didn't call me in the middle of the day like this and she just sounded serious. She told me to sit down and to prepare myself for what she was about to say. Dr. Broome was more than just a physician to us; she had become a friend and a trusted partner on this cancer journey so I felt the pain in her voice as she said, "It's back". We were both silent for what seemed like an eternity until I started crying and decided not to hold it back. In her loving and almost motherly way, she explained how sorry she was and how important it was to act quickly on this and that we should start with aggressive chemo the following week. After assuring her that I was going to be okay, we hung up and I sat on the floor for 10 or 15 minutes (but it could have been an hour for all I knew) in a state of shock. I wasn't crying anymore but I just felt like I was living somebody else's life. This could not be happening.....again. I snapped out of it and knew I needed Hanna with me. I needed to cry with her, talk this out, and just hold her. I picked up the phone and called her at work, something I had never done before.
"Hello?" What I heard on the other line was a voice I'll never forget, an unintelligible voice saying words like leukemia, relapse, chemo, transplant, right away through sniffles and tears. Dan asked me to come home right away. I dismissed my 6th grade social skills lunch group and carefully explained "speech class is over early today" - a particularly difficult concept for my group of students with autism who thrive on routine (a regular, 30 minute session) and who have significant difficulty recognizing social cues (aka your speech teacher hyperventilating). I pulled it together and my SLP friend, Kelly, escorted the students from our therapy session, allowing me a moment of privacy. The next few minutes were a blur of emails to my principal and frantic packing of my things while I slowly processed what I had heard. I raced to my car and immediately called my family, one by one. Everyone's response was the same, a bit of silence, a few "I'm sorry"s, some tears, a lot of "oh no"s and always "I love you". I can't remember parking and I don't know how I made it up the 4 flights of stairs to our apartment so quickly, but I'll never forget the look on Dan's face when I walked in the door. We immediately broke down into a terribly painful fit of tears. We held each other and soaked our shirts saying "it's okay" over and over, when we really knew that was a lie. None of this was okay.
It is hard to imagine these events happened one year ago. So much has happened since then but those moments may as well have been yesterday. The year that followed has been scattered with high peaks and deep valleys but we scaled them all holding hands, trusting in God, believing in our medical teams (we had many!), and finding joy in every day, even when it seemed impossible. We finished that night picking each other up, putting our faith and trust in the future, and going out for Mexican dinner. It might seem like an odd choice of activities but it just felt right at the time. It was our first jab at stupid cancer and its attempt to ruin our days and get in the way of our lives and precious time together. I spent last year's Holy Week in the hospital getting chemo and living some small sliver of the suffering of Christ. This year we are still jumping through medical hoops and living every day with the looming fear of cancer returning, but we are focusing on thanksgiving for being home to celebrate another Easter, for surviving another year, for our doctors, friends, and family, for our marriage which has only been strengthened, and for our faith, which is deeper and fuller and gives us the joy to live every second of every day to its fullest.
Happy Easter and always believe that ALL Will be Well
"We are shining stars, we are invincible, we are who we are. On our darkest day, when we're miles away, sun will come, we will find our way home"
"Life is a storm ...You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes."
It was just like any other Tuesday. I had slept in a bit and was getting ready to head to George Washington University later that afternoon for class. The phone rang and I answered - little did I know it would change everything from that point forward. Dr. Broome was on the other line and I immediately heard in the tone of her voice that something was up. She usually didn't call me in the middle of the day like this and she just sounded serious. She told me to sit down and to prepare myself for what she was about to say. Dr. Broome was more than just a physician to us; she had become a friend and a trusted partner on this cancer journey so I felt the pain in her voice as she said, "It's back". We were both silent for what seemed like an eternity until I started crying and decided not to hold it back. In her loving and almost motherly way, she explained how sorry she was and how important it was to act quickly on this and that we should start with aggressive chemo the following week. After assuring her that I was going to be okay, we hung up and I sat on the floor for 10 or 15 minutes (but it could have been an hour for all I knew) in a state of shock. I wasn't crying anymore but I just felt like I was living somebody else's life. This could not be happening.....again. I snapped out of it and knew I needed Hanna with me. I needed to cry with her, talk this out, and just hold her. I picked up the phone and called her at work, something I had never done before.
"Hello?" What I heard on the other line was a voice I'll never forget, an unintelligible voice saying words like leukemia, relapse, chemo, transplant, right away through sniffles and tears. Dan asked me to come home right away. I dismissed my 6th grade social skills lunch group and carefully explained "speech class is over early today" - a particularly difficult concept for my group of students with autism who thrive on routine (a regular, 30 minute session) and who have significant difficulty recognizing social cues (aka your speech teacher hyperventilating). I pulled it together and my SLP friend, Kelly, escorted the students from our therapy session, allowing me a moment of privacy. The next few minutes were a blur of emails to my principal and frantic packing of my things while I slowly processed what I had heard. I raced to my car and immediately called my family, one by one. Everyone's response was the same, a bit of silence, a few "I'm sorry"s, some tears, a lot of "oh no"s and always "I love you". I can't remember parking and I don't know how I made it up the 4 flights of stairs to our apartment so quickly, but I'll never forget the look on Dan's face when I walked in the door. We immediately broke down into a terribly painful fit of tears. We held each other and soaked our shirts saying "it's okay" over and over, when we really knew that was a lie. None of this was okay.
It is hard to imagine these events happened one year ago. So much has happened since then but those moments may as well have been yesterday. The year that followed has been scattered with high peaks and deep valleys but we scaled them all holding hands, trusting in God, believing in our medical teams (we had many!), and finding joy in every day, even when it seemed impossible. We finished that night picking each other up, putting our faith and trust in the future, and going out for Mexican dinner. It might seem like an odd choice of activities but it just felt right at the time. It was our first jab at stupid cancer and its attempt to ruin our days and get in the way of our lives and precious time together. I spent last year's Holy Week in the hospital getting chemo and living some small sliver of the suffering of Christ. This year we are still jumping through medical hoops and living every day with the looming fear of cancer returning, but we are focusing on thanksgiving for being home to celebrate another Easter, for surviving another year, for our doctors, friends, and family, for our marriage which has only been strengthened, and for our faith, which is deeper and fuller and gives us the joy to live every second of every day to its fullest.
Happy Easter and always believe that ALL Will be Well
"We are shining stars, we are invincible, we are who we are. On our darkest day, when we're miles away, sun will come, we will find our way home"
"Life is a storm ...You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes."
MARCH 2012
Celebrating our 2nd wedding anniversary a little early
in Annapolis, MD before Dan started chemo last year.
Looking forward to a cancer-free 3rd anniversary in 2 weeks!
Sunday, March 10, 2013
Day 130 - Back to Life
I guess it's about time I update you on Dan's progress and our transition back to Virginia. It's been exactly a month and we're finally settled in, back to life (and reality), feeling the closest we've felt to normal in about a year.
Our trek home began with a trans-continental flight with two (overweight) checked bags, two (maximum size regulation) carry-ons, two (as large as possible) personal bags, and one back pack jammed full of IV magnesium and about 15 different medications in tow. Needless to say, our nerves were shot after a stressful TSA encounter with extra scans, questions, and nasty looks by frantic travelers held up in our line. Once security verified we were just an anxious couple with absolutely no intentions of smuggling a bomb onto the plane, we made our way to the gate where Dan was due for some meds. To add to the ordeal, Dan threw out his back lifting our (overweight) bag onto the scale and was in excruciating pain, unable to lift a finger. He swallowed his pills while I checked our carry-ons and tried to manage our way too much luggage. After a brief meltdown, we were on the plane and headed home. SIGH. The day was stressful, but our anxieties were tempered at the sight of our family smiling at the gate in Harrisburg. More importantly, there were more than enough hands to remove every single bag from our possession and I didn't lift another finger either. It was good to be home.
Dan and I spent the weekend in PA, reveling in the fact that we made it, safe and sound, and a new adventure was upon us. We met with our Georgetown team on Monday and had the reunion we'd been waiting for since our goodbye in September. There were hugs and tears and medical talk to make the transition a seamless one. After our appointment, we made our way across the Key Bridge to Virginia soil and our perfect Alexandria apartment. To our surprise, our friends decorated with balloons, streamers, flowers, and stocked it with groceries to hold us over a day or two until we got to the store. Our friends proved amazing once again and set the tone for a restful night/day back home. The previous 48 hours had been extremely exhausting and emotional as we moved out of our Seattle apartment, flew across the country, reunited with family, friends, and doctors, and set foot back into a home that, at one time, we questioned whether or not we'd set foot in together ever again. Needless to say, we held each other tight that night and counted our blessings.
Since then, I'm a lot calmer, Dan's getting stronger, and we feel kind of like a normal couple - but not quite. I had a week off then headed back to work in Fairfax County as a speech pathologist in a middle school. My old position was filled so I'm covering for a maternity leave through the rest of the school year. Those who know my love for the little guys know that this has been a big transition for me, but I'm finding that middle schoolers have their own uniqueness and I'm even enjoying them a little bit! The girls like my clothes and the boys are impressed with my sports knowledge (as long as it's Philly related!). I'm getting used to working full-time after 7 months off, but, it's one more sign that we're "normal" so we'll take it. Dan's getting used to his new life, too. I've added a "to-do" list to his daily medicine log and he's doing a great job checking them off. He is slowly taking reigns of errands throughout the week, goes to daily mass, the movies, and gets a walk in every day. Don't worry, he's still the trivia king and reality TV guru we've all come to know and love.
Medically speaking, Dan's doing just fine. He goes to weekly appointments to consult with our doctors and have his blood checked to help manage his medication doses and monitor his blood counts. The biggest issue keeping him from feeling like himself is fatigue. He sleeps about 10 hours a night and takes a nap every afternoon to keep up with his exhaustion. His strength and spirits are steadily increasing, but he gets tired pretty quickly and that's a pain. He has extreme dry mouth, some rogue rashes here and there, sore muscles, aching bones and a heart rate that can't seem to slow down. There's always some kind of test to monitor this or check that each week, but overall, everyone seems to be happy with his progress. Again, "that's normal" is the typical response to all Dan's woes. As you can imagine, I hate missing the appointments and require a thorough recap of everything that was said. Luckily we joined the iPhone team so I'm hoping to Facetime one of these consults - Dan isn't going for it (I think I embarrass him). The next big milestone is a bone marrow biopsy and spinal tap in April to check for recurring disease in his marrow and spinal fluid. They're routine six-month post-transplant tests, but we'll surely be on edge as we approach the dates. While everything is going well, the possibility of relapse is real and weighs on our shoulders every minute of every day. Keep the prayers steady that his donor cells are keeping leukemia away for good!
I often talk about little joys and searching for them in every day, maybe most especially during times of adversity and fear. As we reflect on the little joys we found in November, when a get well card brought us a smile during the toughest times, and December, when a cloudy day spared the rain so we could enjoy a walk, to January, when a warm bath and a good book gave me peace from my caregiver obligations, I'm reminded how very key joy is in living a full life. Today there were little joys all around me, everywhere I looked. It's easy when the sun is shining, you're in good health, and everyone is smiling. It's easy to tell my husband I love him, to feel spring in the air and to thank God for my blessings at Sunday Mass. But I think it was finding joy on those hard days that taught both Dan and me to live fully, in the truest sense. We live joyfully, we love wholly, and we laugh sincerely. Now, I am by no means thanking cancer for teaching me this lesson. I'm thanking all of you - my family, my friends, and my faith - for bringing us joys, even the ever-so-little joys on the ever-so-dark days of the past year. I hope to carry that mantra with me and to share it with everyone I meet. I hope all of you find little joys and live as happily and with as much love as we do. Because life is good. And ALL is well.
Dan and I spent the weekend in PA, reveling in the fact that we made it, safe and sound, and a new adventure was upon us. We met with our Georgetown team on Monday and had the reunion we'd been waiting for since our goodbye in September. There were hugs and tears and medical talk to make the transition a seamless one. After our appointment, we made our way across the Key Bridge to Virginia soil and our perfect Alexandria apartment. To our surprise, our friends decorated with balloons, streamers, flowers, and stocked it with groceries to hold us over a day or two until we got to the store. Our friends proved amazing once again and set the tone for a restful night/day back home. The previous 48 hours had been extremely exhausting and emotional as we moved out of our Seattle apartment, flew across the country, reunited with family, friends, and doctors, and set foot back into a home that, at one time, we questioned whether or not we'd set foot in together ever again. Needless to say, we held each other tight that night and counted our blessings.
Since then, I'm a lot calmer, Dan's getting stronger, and we feel kind of like a normal couple - but not quite. I had a week off then headed back to work in Fairfax County as a speech pathologist in a middle school. My old position was filled so I'm covering for a maternity leave through the rest of the school year. Those who know my love for the little guys know that this has been a big transition for me, but I'm finding that middle schoolers have their own uniqueness and I'm even enjoying them a little bit! The girls like my clothes and the boys are impressed with my sports knowledge (as long as it's Philly related!). I'm getting used to working full-time after 7 months off, but, it's one more sign that we're "normal" so we'll take it. Dan's getting used to his new life, too. I've added a "to-do" list to his daily medicine log and he's doing a great job checking them off. He is slowly taking reigns of errands throughout the week, goes to daily mass, the movies, and gets a walk in every day. Don't worry, he's still the trivia king and reality TV guru we've all come to know and love.
Medically speaking, Dan's doing just fine. He goes to weekly appointments to consult with our doctors and have his blood checked to help manage his medication doses and monitor his blood counts. The biggest issue keeping him from feeling like himself is fatigue. He sleeps about 10 hours a night and takes a nap every afternoon to keep up with his exhaustion. His strength and spirits are steadily increasing, but he gets tired pretty quickly and that's a pain. He has extreme dry mouth, some rogue rashes here and there, sore muscles, aching bones and a heart rate that can't seem to slow down. There's always some kind of test to monitor this or check that each week, but overall, everyone seems to be happy with his progress. Again, "that's normal" is the typical response to all Dan's woes. As you can imagine, I hate missing the appointments and require a thorough recap of everything that was said. Luckily we joined the iPhone team so I'm hoping to Facetime one of these consults - Dan isn't going for it (I think I embarrass him). The next big milestone is a bone marrow biopsy and spinal tap in April to check for recurring disease in his marrow and spinal fluid. They're routine six-month post-transplant tests, but we'll surely be on edge as we approach the dates. While everything is going well, the possibility of relapse is real and weighs on our shoulders every minute of every day. Keep the prayers steady that his donor cells are keeping leukemia away for good!
I often talk about little joys and searching for them in every day, maybe most especially during times of adversity and fear. As we reflect on the little joys we found in November, when a get well card brought us a smile during the toughest times, and December, when a cloudy day spared the rain so we could enjoy a walk, to January, when a warm bath and a good book gave me peace from my caregiver obligations, I'm reminded how very key joy is in living a full life. Today there were little joys all around me, everywhere I looked. It's easy when the sun is shining, you're in good health, and everyone is smiling. It's easy to tell my husband I love him, to feel spring in the air and to thank God for my blessings at Sunday Mass. But I think it was finding joy on those hard days that taught both Dan and me to live fully, in the truest sense. We live joyfully, we love wholly, and we laugh sincerely. Now, I am by no means thanking cancer for teaching me this lesson. I'm thanking all of you - my family, my friends, and my faith - for bringing us joys, even the ever-so-little joys on the ever-so-dark days of the past year. I hope to carry that mantra with me and to share it with everyone I meet. I hope all of you find little joys and live as happily and with as much love as we do. Because life is good. And ALL is well.
Thursday, February 7, 2013
Day 100 - So Long, Seattle
We're having an emotional day here in Seattle as we prepare to turn the page from this chapter to the next. In the months since Dan's leukemia returned, we've been scared, devastated, hearbroken and angry. We listened to doctors tell us that treatment options were growing fewer and that this disease was a real threat to Dan's life. We searched for protocols and clinical trials, we consulted with oncologists nation-wide, and prayed with family and friends that something would work so Dan could at least have the chance at a transplant. But through it all, despite it all, and because of it all, we searched for hope and we kept the faith. We practiced finding joys in the truly small things. We quite literally lived each day like it was our last and we made memories along the way.
It's day 100. We're here. We made it. Dan beat the odds. We finally heard the words complete remission. There were more than enough ups and downs, twists and turns on this rollercoaster and we're ready to get off, for good. So long, Seattle. Good riddance, leukemia - see you never.
Now sit back, relax and share in our joy as we celebrate where we've been and how far we've come. We did it together and we did it in love. We have so many of you to thank on this very special day.
100 days
(I am not tech-savy enough to embed this video in the blog so you have to open a new window! :))
It's day 100. We're here. We made it. Dan beat the odds. We finally heard the words complete remission. There were more than enough ups and downs, twists and turns on this rollercoaster and we're ready to get off, for good. So long, Seattle. Good riddance, leukemia - see you never.
100 days
(I am not tech-savy enough to embed this video in the blog so you have to open a new window! :))
Monday, February 4, 2013
Day 97 - Homeward Bound
The last few weeks have been a whirlwind of tests, meetings, classes, and consults to prepare us for the more than year long chapter of our story that will be termed "long term follow up". After more than four months we will officially leave the care of the yellow transplant team, the SCCA clinic, and the Pete Gross House and head home to the care of our Georgetown team and, of course, our family and friends. While we couldn't be more excited to transition to this next phase of recovery, it brings with it a number of new complications and continues to require quite a bit of medical management. We're learning firsthand that this recovery will be slow and are coping with the "new normal" life after transplant. Dan takes tons of pills, tires easily, requires a nap a day and suffers from aches and pains on a regular basis. Every few hours there's an IV to pump, a medication to take, or a temperature to log and he is encouraged to exercise twice a day to rebuild his deteriorated muscles (we want Dan to get back to his beefy self!).
For at least the next 3-6 months, Dan will continue his current regimen of medications, weekly doctor visits, bloodwork, daily IV magnesium, and special diet with immunosuppression precautions. We're getting the "okay" to go home, but not much will change right away regarding Dan's medical status. We will closely monitor symptoms at home for possible graft-versus-host disease (GVHD) complications until Dan is off immunosuppressant medications that currently keep the peace between the new and the old Dan. Right now, he and his donor continue to invade each others' space (recall the sandbox analogy) so decreasing his immunosuppression is very delicate and way too complicated to explain in a paragraph. While the drugs keep his immune system suppressed, Dan is much more susceptible to getting sick, hence the excessive hand washing, isolating from crowds, avoiding sick people, and following a special diet. Naturally, we'd like him to be off these medications, but the risk of his body flaring in severe GVHD (an epic sand fight) is too large so our team is recommending we continue the medications for the first year.
In other news, my parents came for a quick visit this week to celebrate the good biopsy results and lug home a few checked bags of our stuff back to PA. We gave them the clinic/hospital tour, ate some great meals, visited a few tourist attractions, and made plans for the transition to our new "regular" life at home. It was a great visit and geared us up even more about heading east.
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| a day at the clinic |
We're experiencing a lot of emotions about going home that include excitement, joy, and relief, but we'll also scared, anxious, and overwhelmed at the thought of this going on for at least another nine months and likely longer. The transplant took a toll on every part of Dan's body and the repercussions of that are lifelong. We are blessed and always grateful to our medical team for safely getting Dan to this point, but we have a long way to go and many risks ahead. We thank God every day that the leukemia is gone and ask for strength and endurance to continue safely to the finish line. We can't live our days afraid of relapse or obsessing over signs of GVHD. What we can do is live and love fully, find little joys every day, love our family, cherish our friends and take care of Dan today. We've learned a lot about that in the last three and a half years and even more in these 100+ days, but we will continue to remind ourselves of our blessings to muster up the courage we'll need in the future.
The leukemia is gone. We got what we came for, but this journey is not over. Dan's progress is slow and the difficult task of getting back to normal is just beginning. Through our faith, our family, and our friends in addition to the advancements in the research of this disease we have the strength, courage and endurance to stick with this. We will win and ALL will be well.
AHH OMG!! We're going home!
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