Friday, January 25, 2013

Day 87 - Cancer-Free

When we envisioned days 80+ in Seattle, we didn't anticipate a few trips to the hospital, a lingering fever soaring over 103 degrees, or a week on the couch sleeping all day. Our trip with Evan started out as planned with Mcdonald's Mcrib eating, some Netflix watching, and Seattle touring. It all came to a halting stop when I woke up with some chills and a pretty high fever. All three of us gathered ourselves at 2am and headed to the hospital where we checked back in to 8NE at the U Dub. They took some blood cultures to look for a source of an infection, gave me a dose of antibiotics and sent us home to monitor my fever for the rest of the day. We got a few hours of sleep hoping the fever would resolve, but, it spiked again the next afternoon so I got myself a hospital admission so the docs could more closely follow my symptoms. To my dismay, I'd joined the ranks of the more than 60% of post-transplant patients who end up admitted to the hospital. After three days watching the game show network and daytime court tv, the fever resolved and they sent me home, never having discovered a cause for the fever (which is also very common). Fortunately, my discharge was just in time to have one more really good day with Evan before he headed back east. It ended up being a pretty great time for him to visit because I knew Hanna was in the hands of her big bro instead of hours at my bedside while I sleep and home alone in an empty apartment.

The next big milestone was the the routine day 80 biopsy. This was particularly significant because we knew a "negative" result for leukemia was our ticket back home to Dr. Broome's care at Georgetown and an end to this Seattle chapter of our story. More than anything, it would mean that the cancer was still 'away' and we could take some more baby steps back to normalcy. I had the biopsy in the morning and was immediately transferred to the triage room for further evaluation with another temperature spike. At that point, we were so over the back and forth with a fever that could not be explained. We finally got home and began an agonizing 24 hours of suspense trying to be normal and waiting for the results while monitoring my temperature for another spike. We went through the motions of eating dinner, swallowing pills, taking my temperature, and watching The Newsroom and possibly Teen Mom 2 (I'm going to claim that the fever blinded my judgement on that one).

Wednesday morning, Day 85, we got the call that the biopsy was clear of leukemia and I was cancer-free!!!! Hanna and I immediately started crying, hugging, and dancing....and I may have told the doctor I loved him. This was the news we knew lead to two tickets home in a couple weeks. This was the news that means the new cells are taking over and doing their cellular thing (that's technical medical jargon there, sorry for being so scientific). Once the dancing stopped, we spent the rest of the day smiling at each other and thinking beyond Seattle for the first time. We know that this is nowhere near the end of this journey. There will still be several years of frequent doctor visits and more scary bone marrow biopsies. But, it does mark the end of the Seattle chapter which has been equal parts exhausting, wonderful, scary, and hopeful. We close this chapter with stronger love, deeper faith, and a brand new outlook on life.

I know I have said it a million times but I just know that this would not have been so successful without the love of my life by my side through it all. Hanna has been the loving wife, selfless caregiver, and friend by my side to laugh, cry, or just hold. This week, more than any, I needed her and she was there every second. I am so blessed to walk this journey with Hanna and to know that we will continue to walk our journey for many, many years to come. We have been reflecting and talking about all the memories, good and bad, that we have made here in Seattle. We have also been talking about the people and things that we are so excited to see when we get back to the east coast. We haven't seen our Alexandria apartment in over six months and miss the comforts of our real home. We are truly counting down the days and can't wait to make this transition. Thanks to all for the constant and continued love, support, and help us to know, without doubt, that....

ALL Will Be Well

"Clear Eyes, Full Hearts, Can't Lose"

"In the Evening of Life, We Will Be Judged on Love Alone"

Toasting to cancer-free!

Thursday, January 10, 2013

Day 72- Side Effects

Muscle cramps.  Fatigue.  Sunburn.  Side effects.  That's what seems to consume our days as we creep closer and closer to day 100 in this wet, rainy, cloudy, yet beautiful city.  The side effect management also seems to be ever-changing, compelling almost daily trips to the drug store to try our luck at a new remedy.  Excruciating muscle cramps keep Dan awake throughout the night and continue to throb during the day, further contributing to an already present fatigue that keeps him from feeling like himself.  He wakes up feeling tired then works hard to be active so he can take a nap in the afternoon when the exhaustion really kicks in.  On top of that, his muscles have all but completely deteriorated from the prednisone, so he'll get some physical therapy at the clinic to keep his muscles from wasting away any more.  The UV treatment that manages the GVHD rash has caused some pretty uncomfortable sunburn that now requires full body aloe and moisturizer massages twice a day (funny, I haven't heard Dan complain about them yet!).  Another nuisance in our daily routine is two, 2-1/2 hour infusions of IV fluid with quite a bit of magnesium to supplement a magnesium level Dan isn't able to maintain - yep, that's a normal medication side effect - and, yep, magnesium infusions have side effects, too.  On top of making him run to the bathroom every hour from the fluids, the magnesium makes Dan feels very flushed and hot, turning his cheeks bright pink.  While I assure him he looks cute, he's not buying it.  I guess the gist of it is, Dan's tired, he's weak, he's sore, he's in a variety of types of pain at any given time, he's anxious, and he's ready to feel better.

It's easy to see why our team keeps such a close eye on Dan - turns out this whole bone marrow transplant thing is really very complicated.  Things are going as well as can be, but while the donor marrow and Dan hash it out, his poor body gets quite a beating.  Dan's progress has plateaued somewhat from the leaps and bounds of improvements he made soon after the transplant.  He feels so much better than he did a month ago, but still doesn't feel completely normal.  We've been at this a long while now and feel at a bit of a lull. 

Although we're pretty much "over" dealing with all of this, I assure you, we're still finding our little joys.  We always feel at least a little anxious watching a rash, treating a rash, hanging IV fluids, meeting with doctors, nurses, nutritionists, pharmacists, not to mention the always-looming fear of relapse, but despite all of that, our life out here is pretty great.  We spend nice, quiet mornings drinking coffee and watching the news, fun afternoons exploring the city, and relaxing evenings catching up on shows or playing a game.  We get to spend every minute together and have developed a whole new language from all of the inside jokes we've made.  We treat ourselves to coffee, dessert, and snacks anytime and and have no where to be except a couple appointments throughout the week.  We feel the love from all over the country through mail, packages, texts, and emails, every day.  All of these things make managing the side effects a lot easier.  This is why we're here.  This is our job.  Dan is a patient and I am a caregiver. 
We're gearing up for a visit from my brother, Evan this weekend and are looking forward to showing him around our new home.  Soon after he leaves Dan will have his final biopsy before we can make plans to move back home! It's not scheduled yet, but start kicking up the prayers that things continue to look good.  ALL is well and we'd like it to stay that way :)

Much love,