What'd you get for 54 days on the east coast after earth-shattering news that your cancer has, yet again, relapsed and your plans for a cure must be postponed? You cash in 23 days in the hospital (for Dan), 23 days on the O'Connell's couch (for me), 8 days of chemo, 3 biopsies, and 2 nights in a Georgetown hotel monitoring precarious temperatures fearing infection (Even with no immune system Dan managed to fend off an infection, my hero. We actually enjoyed somewhat of a vacation complete with room service and movies!) When not partaking in the aforementioned activities, we spent countless days and nights with family and friends, lifting our spirits, eating right, laughing, crying, WAITING, and making plans to get back to where we started.
So, here we are, back where we started. Since March and the first relapse, we've been planning for Sunday. We knew Dan needed a transplant, that there would be chemo, biopsies, risks of infection and ultimately, re-location for treatment. We didn't know there would be another relapse with subsequent chemo, biopsies, infections, and a move back in with our parents. However, all of that brought us to today. It brought us to this remission, this final remission, and a chance to hear that word "cure". Dan gained back every pound of the 15 he lost, he looks great, he feels great, and he's more ready than ever to handle the beating he's about to take. We're completely and utterly traumatized by our last experience in Seattle, but are entering this with restored strength and renewed hope.
We're flying out Sunday, the 30th from Harrisburg and land in Seattle just in time for some Sunday evening football (luckily the Eagles are the night game). We'll settle into the temporary housing until our first appointment on Tuesday, October 2nd. We'll get our work-up schedule with various tests, classes, meetings, a biopsy, and spinal tap leading to the tentative transplant date - October 23rd. I think once we have good results of the biopsy out there we'll finally relax a little, knowing that the transplant is officially a go. Until then we'll be holding our breaths in fear that the cancer will come back. As much as we'd like the transplant to be tomorrow, we understand that the process is complex and we are trusting the experts to take care of the timing. All we can take care of is Dan, making sure he goes into the transplant as strong, healthy, and mentally prepared as possible. So that's what I do.
We are on the waiting list for the permanent housing and will send out that address as soon as we have it. We are sure to be lonely and anxious the first several weeks, so we'd love to hear from all of you. We love hearing "normal" things and catching up on the happenings from home, so please send notes our way! For now it's best to send things to Patty Lyons at 527 Fairway Drive, Camp Hill, PA 17011. She'll send our mail to our temporary address so as not to anger the postal service with a 4th address change in 2 months.
Signing off for the last time in PA. Looking forward to writing the next post from Seattle!
Friday, September 28, 2012
Thursday, September 13, 2012
Strength Restored, Hope Renewed
We're teaming up on this post from our usual spot on 2 Bles at Georgetown with some chemo and fluids dripping from my pump. A lot has been going on since our last entry, but finally we can share that ALL is well and there is good news all around. My last visit in the hospital was cut short after the doctors confirmed I didn't actually have an infection, so I went home just in time for my brother-in-law, Tyson's wedding to his beautiful bride, Christy. The whole fever thing was a result of chemo and neutropenia (the low white blood cell count and compromised immune system) and my body working extra hard to get back to normal.
We've been doing a lot of waiting these days - for results, for phone calls, for plans. Last time we wrote, there were two biopsies and a whole lot of anxiety between us and a phone call to Seattle docs to get back on the transplant schedule. The first remission results came from a teary-eyed doctor Broome to us, our moms, nurse-turned-friend, Dawn and friend-turned-doctor, Jimmy. There wasn't a dry eye in the room as we shared hugs to celebrate. I can't even describe the relief and sense of hope that resulted. We suddenly had appetites and enjoyed a dinner together on campus. Coincidentally (I believe), my fever broke and I was discharged the next day. I tried to convince Dr. Broome and Jimmy it was a stress-induced fever, but they politely disagreed. We came back to DC on Tuesday for a follow-up biopsy to see how my marrow was producing cells and make sure it learned a thing or two from the most recent chemo sesh. Everything continued to look great so we got in touch with Fred Hutch in Seattle to get the ball rolling once again. They contacted my donor and set up a tentative schedule, which will include some more tests, another biopsy, spinal tap and radiation. More information TBD, so stay tuned! The tentative transplant date is October 18th and we couldn't be more excited.
The highlight of going home earlier than expected was going to Tyson and Christy's wedding. It was amazing and inspiring to spend the day with family and friends and to celebrate a beautiful sacrament. It meant so much to be there and had as much positive effect as any bag of chemo. I thank Tyson and Christy for pulling some last minute strings to get me to the reception. Our parents have been so accommodating letting us stay in their homes during this transition. I hit the golf course with my father-in-law Bob, even convincing him to ride in a cart (amazing what the cancer card can get you). We had a great time, though I am pretty sure I doubled his score. I gained some weight back, likely thanks to my mother-in-law Wanda's exquisite shrimp scampi and other restaurant quality entrees, as well as an outing to Friendly's with my mom, Patty and her continuous smorgasbord of snacks. We have also been spending lots of quality time with our siblings and niece and nephews.
Looking back it almost seems like our 'setback' has been a blessing because it provided us with all of these memories and rejuvenating times with our families. I wouldn't trade being at Tyson's wedding, holding the youngins in our family, being the first 'non-parent' to meet Faith Mariel O'Connell, watching Hanna's friendship grow with the hospitable O'Connell clan, and feeling the constant love, support, and prayers from far and wide. It inspires us and strengthens us.
I am finishing up some "chemo lite" that ends tomorrow and should hold me over until the transplant in October. We'll spend the next few weeks getting my strength up and making plans to re-locate once again. We're on the waiting list for housing and are expecting phone calls and schedules from our transplant team at the Hutch. The thought of moving again is overwhelming, but we're so ready for this change and, ultimately, a cure. We are looking forward to taking big steps, always knowing that ...
ALL Will Be Well
"Faith and hope lead us to love and in the end all will be love"
--Julian of Norwich
We've been doing a lot of waiting these days - for results, for phone calls, for plans. Last time we wrote, there were two biopsies and a whole lot of anxiety between us and a phone call to Seattle docs to get back on the transplant schedule. The first remission results came from a teary-eyed doctor Broome to us, our moms, nurse-turned-friend, Dawn and friend-turned-doctor, Jimmy. There wasn't a dry eye in the room as we shared hugs to celebrate. I can't even describe the relief and sense of hope that resulted. We suddenly had appetites and enjoyed a dinner together on campus. Coincidentally (I believe), my fever broke and I was discharged the next day. I tried to convince Dr. Broome and Jimmy it was a stress-induced fever, but they politely disagreed. We came back to DC on Tuesday for a follow-up biopsy to see how my marrow was producing cells and make sure it learned a thing or two from the most recent chemo sesh. Everything continued to look great so we got in touch with Fred Hutch in Seattle to get the ball rolling once again. They contacted my donor and set up a tentative schedule, which will include some more tests, another biopsy, spinal tap and radiation. More information TBD, so stay tuned! The tentative transplant date is October 18th and we couldn't be more excited.
The highlight of going home earlier than expected was going to Tyson and Christy's wedding. It was amazing and inspiring to spend the day with family and friends and to celebrate a beautiful sacrament. It meant so much to be there and had as much positive effect as any bag of chemo. I thank Tyson and Christy for pulling some last minute strings to get me to the reception. Our parents have been so accommodating letting us stay in their homes during this transition. I hit the golf course with my father-in-law Bob, even convincing him to ride in a cart (amazing what the cancer card can get you). We had a great time, though I am pretty sure I doubled his score. I gained some weight back, likely thanks to my mother-in-law Wanda's exquisite shrimp scampi and other restaurant quality entrees, as well as an outing to Friendly's with my mom, Patty and her continuous smorgasbord of snacks. We have also been spending lots of quality time with our siblings and niece and nephews.
Looking back it almost seems like our 'setback' has been a blessing because it provided us with all of these memories and rejuvenating times with our families. I wouldn't trade being at Tyson's wedding, holding the youngins in our family, being the first 'non-parent' to meet Faith Mariel O'Connell, watching Hanna's friendship grow with the hospitable O'Connell clan, and feeling the constant love, support, and prayers from far and wide. It inspires us and strengthens us.
I am finishing up some "chemo lite" that ends tomorrow and should hold me over until the transplant in October. We'll spend the next few weeks getting my strength up and making plans to re-locate once again. We're on the waiting list for housing and are expecting phone calls and schedules from our transplant team at the Hutch. The thought of moving again is overwhelming, but we're so ready for this change and, ultimately, a cure. We are looking forward to taking big steps, always knowing that ...
ALL Will Be Well
"Faith and hope lead us to love and in the end all will be love"
--Julian of Norwich
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