Wednesday, October 31, 2012

Day 1

He did it!  Today is day 1, which brought along with it relief, excitement, and joy for both of us and some nasty side effects for Dan.  The chemo and radiation from last week are finally catching up to him and he woke up with a pounding headache, vomiting, a sore mouth, and no appetite.  Luckily, between some great medications and pretty good coaxing from yours truly, he's eating enough to satisfy the team for now and keeping up with his schedule. He's resting a little more today but is doing a great job taking walks and moving around.  What a guy :)
So now we begin the journey of 100 days until we are homebound for the east coast.  Dan will get much sicker before he gets better because he has no immune system right now to help his body run normally.  His donor's cells are wandering through his marrow and will eventually figure out how and where they fit.  The chemo/radiation killed what existing cells he had, leaving Dan in a compromised state.  The donor cells usually take up their new residence in about 14 days when we'll see his blood counts start to rise (engraftment).  He will then begin to feel better and better each day.  Until then, Dan has to do a good job of letting his team know how he's doing and they'll treat him as best they can.  They have lots of ways to make him comfortable and have been wonderful already.   

Last night was beautiful and special and one that we will remember forever.  We got to actually see all of our family from Camp Hill to Pittsburgh to Chicago and San Fransisco and share in the amazing experience.  Technology is amazing.  Everyone sang "happy birthday" to Dan as the cells infused.  There wasn't a dry eye on either side of the camera! Here are some pictures of the big night. 

Our Camp Hill family making a celebratory toast
Having a moment - the stem cells are in the bag!

 Thanks for all the prayers and well-wishes yesterday.  We are so blessed - hugs from Seattle!


Sunday, October 28, 2012

"Come Monday"

"Come Monday, it'll be alright."  As soon as the first few bars played at the Jimmy Buffett concert last week Dan and I had an "aha" moment.  Our eyes welled up and I'm sure we got some weird looks, but it certainly brought about some emotions in us both.  Pretty soon, everything will be alright and we are ready.

We are here at the University of Washington Medical Center getting acquainted with the transplant unit and settling in for about 3 weeks.  Dan had 3 days of total body radiation this week that he tolerated pretty well until Thursday morning when he started getting some chest pain.  Long story short, after hours in the emergency room, tens of tests with negative results (thank god), we landed ourselves at the hospital a day early.  He had some pretty scary blood pressures and heart rates so it was just as well.  Everything was back to normal during the night Thursday and we were right back on track Friday for chemo.  Dan got two doses of chemo on Friday and Saturday and is taking today to rest and gear up for the big day on Tuesday.  Turns out his stem cells will arrive too late tomorrow night so they will infuse them on Tuesday during the day.  His cells will still "come Monday" but his official transplant day is now October 30th.  We were kinda bummed at first to wait another day, but feel like the ball is already rolling and we're on our way.  Please think of us in an extra special way on Tuesday - tomorrow we'll be resting; although prayers always welcome!

Welcome to bone marrow transplant 101:  Dan is having an allogenic stem cell transplant aka bone marrow transplant from an unrelated donor.  The only known information about his donor is that she is 21 years old.  The donor's stem cells will be infused through Dan's central line - the same way he gets chemo, etc. now.  The infusion takes anywhere from 2-12 hours and will take place right in his hospital room, me by his side.  The medical team will keep an eye on him and frequently take his vitals, but it should be very similar to the many blood transfusions he's had before.  Dan is also on an immuno-suppresant drug that prevents him from rejecting the donor's cells.  After the stem cell infusion, we wait for the cells to "engraft", in other words, for Dan to accept the donor's cells.  This process takes anywhere from about 10-21 days.  During that time, he will experience significant side effects from chemo/radiation and lack of blood cells such as mouth sores, nausea, vomiting, fatigue, etc.  Once engraftment takes place, he will start to feel better and gain back some strength and energy.  He can be discharged from the hospital once his blood counts start to improve and he is eating, drinking and walking about the halls, hopefully in about 3 weeks. 

It is hard to describe how I feel about this day finally being here.  Dan and I have been married now for 2 1/2 years, all of which Dan has had cancer.  He took chemo therapy pills on our wedding night and every single day until his relapse.  We packed his pills on our Costa Rica honeymoon, lugged them camping to the Fo, on spring break adventures, beach vacations, and countless weekend getaways.  Dan taught freshman Econ at GW after having IV chemo and a spinal tap.  We celebrated our second anniversary over cafeteria dinner at Georgetown Hospital.  He has always handled whatever side effects showed up with grace and sincere positivity.  We have never let cancer get in the way of life, in the way of family time, taking adventures, or making memories.  We live with cancer.  But now it is time for cancer to stop.  No more packing pills, no more Ensure shakes, no more staying home on Thursday night to take Methotrexate pills.  Time for Dan to finish school and time for us to plan our family.  We have so many plans and cancer is not one of them.  So I guess I'm feeling a lot of emotions about the transplant.  It is a day I hoped never to see, but I am more than excited to kick cancer out of my life for good.  I am scared of seeing Danny sick, tired, and maybe depressed.  I am overwhelmed about the long-term care that we face for years to come.  I am sad that the person I love so much has to endure such pain to get rid of this disease.  But I am grateful for modern medicine and this chance for a cure.  I am excited to start a new chapter in our marriage and I am hopeful that this is it.  We are almost there.  Our countdown can finally begin and our new life is here.

I will try and update the blog at least once a week with Danny's progress.  Please kick up the prayers and continue to send well-wises and cards.  We are making our room a little homier with some cards already.  Dan is doing well and ready for the big day.  He is still rocking his signature grin; though, maybe partially due to Notre Dame's big win again last night.  Thanks for sharing this journey with us.

 ALL will be well!




Friday, October 19, 2012

ALLmost There

We have been in Seattle for over two weeks now and are starting to get used to the Seattle mist (fall has finally arrived here).  We have found out that true Seattleites never carry umbrellas so we scrapped them in an attempt to fit in.  We rented a car and explored the area much more which has been lots of fun and made for good adventures.  Between exploring waterfalls, finding new restaurants, and obsessively watching Game of Thrones and the Tudors, I had many tests, exams, and appointments in preparation for the transplant.  Everything has been going well and I have been meeting all the necessary requirements (despite all the havoc that chemo and a few college parties has wreaked on my liver, it's still in great shape!) .  The only surprise was a pretty horrible and extremely itchy rash from a drug allergy.  It covered my arms, chest and back but we figured out the culprit and it is all disappearing nicely.  This afternoon Hanna and I will meet with the doctors and nurses one last time to go over all of the tests from the last few weeks and officially consent to the long awaited transplant. 

Next week I will have three days of outpatient total body radiation and then two days of inpatient high dose chemo, followed by a day of rest and then the first day of the rest of my life, a new immune system, and the beginning of a cure.  I have known this day to be necessary ever since my relapse in March and have been hoping for it ever since.  I am fearful but mostly hopeful and joyous.  The selfless donation of a 21 year old girl somewhere is giving me the opportunity to restart my body and continue my life.  I don't say "restart" my life because it has definitely never stopped.  Hanna and I have been living and loving life through every step of this most recent bout.  We have been sad, cried, and, at times, danced for joy (literally), but life didn't stop.  I continue to be inspired by the love, dedication, and spirit of Hanna, our families, friends and the many that have gone from strangers to partners in this fight.  We will remember this time forever and I have no doubt it will impact the way we live every single day.

So, the countdown is on and we are so ready to dive in and come out on the other end with a cure.  The next few months are going to be very challenging but we know that every day will be one step closer to coming home and one step closer to our cure and getting back to normal.   The thoughts, prayers, and well wishes from everyone truly help us through the tough days and give us strength when we need it.  As of this evening, the transplant will be officially to our ears.  We are going into this last round swinging, with renewed energy and uplifted spirit!

Much love, thanks for journeying with us.  I know that....

ALL Will Be Well

"All we have to decide is what to do with the time that is given us"

Friday, October 12, 2012

Déjà Vu

Good morning from our new, temporary home.  It's Friday afternoon on the east coast and our family and friends back home are probably gearing up for a beautiful fall weekend.  We are also looking forward to a break from appointments and a free weekend to sight-see and take advantage of the rain drought in the Pacific Northwest. Dan and I have yet to feel a drop in this "rainy" city and are beginning to believe its dreary weather reputation is nothing more than a ruse!

We have been here almost two weeks and we apologize for the lack of posts.  Our first week here was a rush of appointments, intimidating doctor consults, and deja vu as we followed the exact same schedule as our July visit.  They really have the system down to a science - we are back on the yellow team with the same set of nurses, social worker, nutritionist, etc. as our first visit.  The doctors rotate each month and aren't associated with a team color, but the other team members remain with you for the duration of your stay.  Dan had a million tests/procedures to make sure he's fit enough to handle the transplant, including a lung function test, a heart test, a dental appointment, spinal tap, various blood tests and even a psychological exam.  The most nerve-racking and important test in our first week was the final bone marrow biopsy to confirm remission.  Our doctor let us know in less than 24 hours that results were good, making Dan officially a transplant patient.  We felt a weight lifted from our shoulders because we had made it past the block that was consuming our thoughts since the August relapse.  Until hearing those words, we didn't know if we'd ever have the chance at a transplant, and we know that so many people don't.  Needless to say, we were more than relieved and overjoyed to be given the opportunity.  Our deja vu is over as we enter uncharted territory. 

My grad school roommate and dear friend, Lisa and her husband Ryan visited us this week.  They are a huge blessing and great company, support, fun, and provided a nice distraction while we wait and wait (and wait) for the transplant.  Some of the highlights included sight-seeing at Alki beach, a ferry ride, and a second wedding anniversary dinner celebration for a beautiful couple.  Lisa and Ryan rented a car and were able to help us move from the temporary housing to our permanent apartment when we got the call on Monday.  We can't help but think this is God's way of walking at our side.  The timing could not have been more perfect, and we are blessed to have such wonderful people to call friends.  Thanks, Larsons!

The tentative transplant date is October 29th with chemo and radiation (conditioning) beginning sometime around the 23rd.  It is undecided if Dan will be admitted for the conditioning or not.  He will definitely begin his hospital stay for the transplant and is expected to be there for 3-4 weeks.  After that, he'll have almost daily visits to the clinic for the next 70 days or so.  More info on that to come.  The transplant, of course, brings with it a new set of fears and the risks are overwhelming.  We know we are in the best hands with experts who can give Dan a cure.

We took some classes this week to educate us about what to expect, how to keep things clean for severely immuno-suppressed patients, how and what to offer patients with a variety of nutritional needs, and how to emotionally support a post-transplant person.  While we are scared and anxious, we felt comforted and strengthened by the room full of people that are in our shoes.  It's easy to feel like you're the only one sometimes and that you're alone in your struggles.  When I looked around at the different people from all over the country, going through exactly what I'm going through, I realized that I'm not alone.  We aren't alone.  There were spouses, siblings, and parents with their children learning how to take care of their "patient" - they're loved one.  Everyone in that room so desperately wants what I want, a cure for their Dan.  I feel up to the challenge and will do whatever I can to help my patient get through this. 

Keep the love coming to our new address:
525 Minor Avenue North, Apt. 101
Seattle, Washington 98109