It's been a week since Dan had a testicular mass removed during an uneventful, successful surgery at Georgetown. It's been a week of hoping that Dan had testicular cancer and that he was just the unluckiest guy in the world to get two different types of cancer by age 32. A week of ice packs, Percocet, naps, parties, batisms, and birthdays. Dan's cancer is ALL. For the fourth time, we've been shocked and knocked down by the words "the biopsy showed leukemia". This time, hiding in its notorious sanctuary site. A place that's resistant to chemotherapy and a sanctuary for leukemia to go unseen. A place treated with extra doses of radiation that we'd hoped would keep it away.
Today we'll spend the day at Georgetown meeting with our urologist and hem-onc team. The urologist will discharge us after checking the incision site and then we'll make our way to the Lombardi center we've come to call a second home. Of course, Dan can look forward to a bone marrow biopsy to evaluate his marrow and see if there are abnormal cells developing there. He'll also have a spinal tap to check the brain fluid for leukemia hiding in its second favorite sanctuary. The results of these tests will be back next week and our teams will collaborate to come up with a unique regimen of treatment to kick this cancer yet again. We'll meet with our doctor Monday the 29th to get started.
Leukemia is smart. Treating it is hard. It runs through the blood but also hides in the testicles and brain fluid and can go undetected sometimes. These two "sanctuaries" are resistant to chemo and need to be targeted specifically if leukemia develops there. It's possible that the leukemia cells are limited right now only to one sanctuary site and have not developed yet in his marrow. There is a range of possibilities that only test results will confirm, but we're praying it's restricted to the testicles right now. Treatment options vary as well so I won't speculate here until we have more information. For now, just pray we caught it soon and that the spinal tap and bone marrow biopsy come back clean.
We're doing okay and hanging in there. We've learned from doing this so many times now how to balance tears and fears with moments of joy. We give ourselves time to be sad, to cry, to lament in sorrow and then we drag ourselves out of that place and into the present. The here and now of this very moment. Dan is feeling great, we have each other, I'm not working and neither is he. Mornings are hard but we're approaching today with hope that test results will come back clear of leukemia. We're going to enjoy our weekend and put this aside as best as we can. As always, we'll find little joys in spite of leukemia.
Thanks for the outpouring of love and prayers yesterday and as we prepare for battle again.
Thursday, July 18, 2013
Monday, July 8, 2013
Day 250 - A Trip to the Urologist
"You have cancer" were words we never thought we'd hear from a urologist today. The "c-word" we never wanted to hear again. A mass we never wanted to find and a specialist we never wanted to see. Dan has cancer. Again.
It started last week when Dan found a "lump" that prompted us to interrupt our doctor's California vacation with a frantic text. She advised us to head to the ER so off we went. Now, last weekend was not just any weekend for us. We happened to be in northwestern PA at my storied family reunion so we made our way from the family campsite to the local hospital for an exam. The doctor there referred us to a urologist to take a further look at the "mass" after he ruled out some simpler causes. He dropped the "c-word" and discharged us back to camp. Needless to say, our spirits were shot, but we did our best to muster up some strength to put this news aside and enjoy our weekend with beloved family and friends. We interrupted our doctor in California one more time and she set us up with a urologist appointment this afternoon. It was a great distraction up in PA, but we were ready to get home and get some answers.
Here's what we know: Dan has a small to medium mass in his left testicle. It is most likely cancer. The way to deal with masses there is to surgically remove the testicle and then biopsy the mass to plan subsequent treatments and/or observations. Testicular cancer has at least a 90% cure rate with minimal changes to life after surgery; however, there is a "wrinkle" (doctor's word) given Dan's "history". Sometimes a mass in the testicles turns out to be lymphoma (a similar type of blood cancer to leukemia that presents as a tumor/mass). This is unusual in most people, but given Dan's "history", the risk of lymphoma hiding there is slightly elevated. The doctor today was confident that the tumor looks consistent with testicular cancer. We don't want Dan to have testicular cancer, but we really don't want him to have lymphoma - and we won't know for sure until after the surgery and the biopsy results come back.
We got home a few hours ago and are still processing the fact that Dan has cancer again. We are happy that it doesn't appear to be related to his previous cancer, but are devastated at another set-back from normalcy. We are anxious about the surgery, the biopsy results and any possible radiation/treatment Dan might need to kick this thing for good. We will likely "have a urologist" now and can add that to another team of specialists who already look after our dear Dan. We can expect CT scans in our future and close observation of another part of Dan we didn't know we needed to observe. We spent the afternoon in a new ER on Friday and a new building at Georgetown today. Dan is having his first surgery. We are tired. We are exhausted from worrying and from speculating. We are still looking forward to the two-week stretch without seeing a doctor. We are hopeful that this will be in the past next week at this time and Dan can get back to recovering from the bone marrow transplant he had just 8 months ago. We are optimistic that ALL will be well, just a little later than sooner.
Dan is doing great. He's feeling better than ever. Thankfully he found the mass and fortunately this cancer is curable. The surgery is not scheduled yet but will be sometime later this week. It will be outpatient and hopefully our summer plans aren't interrupted. We can't wait to see our niece baptized this weekend, to gather with friends for a long weekend in a lake house later this month, to spend quality time with family at the beach, and witness some great friends get married in August. We know we are loved and have so many people carrying us on this journey. Thanks for your continued prayers and extra muscle strength as we climb up another hill on our way to the top.
It started last week when Dan found a "lump" that prompted us to interrupt our doctor's California vacation with a frantic text. She advised us to head to the ER so off we went. Now, last weekend was not just any weekend for us. We happened to be in northwestern PA at my storied family reunion so we made our way from the family campsite to the local hospital for an exam. The doctor there referred us to a urologist to take a further look at the "mass" after he ruled out some simpler causes. He dropped the "c-word" and discharged us back to camp. Needless to say, our spirits were shot, but we did our best to muster up some strength to put this news aside and enjoy our weekend with beloved family and friends. We interrupted our doctor in California one more time and she set us up with a urologist appointment this afternoon. It was a great distraction up in PA, but we were ready to get home and get some answers.
Here's what we know: Dan has a small to medium mass in his left testicle. It is most likely cancer. The way to deal with masses there is to surgically remove the testicle and then biopsy the mass to plan subsequent treatments and/or observations. Testicular cancer has at least a 90% cure rate with minimal changes to life after surgery; however, there is a "wrinkle" (doctor's word) given Dan's "history". Sometimes a mass in the testicles turns out to be lymphoma (a similar type of blood cancer to leukemia that presents as a tumor/mass). This is unusual in most people, but given Dan's "history", the risk of lymphoma hiding there is slightly elevated. The doctor today was confident that the tumor looks consistent with testicular cancer. We don't want Dan to have testicular cancer, but we really don't want him to have lymphoma - and we won't know for sure until after the surgery and the biopsy results come back.
We got home a few hours ago and are still processing the fact that Dan has cancer again. We are happy that it doesn't appear to be related to his previous cancer, but are devastated at another set-back from normalcy. We are anxious about the surgery, the biopsy results and any possible radiation/treatment Dan might need to kick this thing for good. We will likely "have a urologist" now and can add that to another team of specialists who already look after our dear Dan. We can expect CT scans in our future and close observation of another part of Dan we didn't know we needed to observe. We spent the afternoon in a new ER on Friday and a new building at Georgetown today. Dan is having his first surgery. We are tired. We are exhausted from worrying and from speculating. We are still looking forward to the two-week stretch without seeing a doctor. We are hopeful that this will be in the past next week at this time and Dan can get back to recovering from the bone marrow transplant he had just 8 months ago. We are optimistic that ALL will be well, just a little later than sooner.
Dan is doing great. He's feeling better than ever. Thankfully he found the mass and fortunately this cancer is curable. The surgery is not scheduled yet but will be sometime later this week. It will be outpatient and hopefully our summer plans aren't interrupted. We can't wait to see our niece baptized this weekend, to gather with friends for a long weekend in a lake house later this month, to spend quality time with family at the beach, and witness some great friends get married in August. We know we are loved and have so many people carrying us on this journey. Thanks for your continued prayers and extra muscle strength as we climb up another hill on our way to the top.
Wednesday, June 19, 2013
Day 230 - School's Out For Summer
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!
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!
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.
Subscribe to:
Posts (Atom)