Thursday, September 29, 2011

Round Deux

I'm not feeling very reflective or verbose today, but I wanted to send along a quick update, for those of you keeping up with our blog. We've had (much to our surprise) over 4,300 hits in the past month (!), so thanks for reading and following along with us! Knowing we are surrounded and supported by such a "great cloud of witnesses" makes this journey feel far less lonesome...

We're just about to begin Operation Fight Brain Cancer: Chemo Round 2. Patrick's at NIH getting his pic line inserted this morning, and will begin his week of chemo tomorrow. Since I last wrote, we "successfully" moved out of our house in Del Ray, and into our new place in Great Falls, VA. It's strangely a wee bit freeing to not have to worry about 3/4 of our belongings that are now hiding out in Pod Land. With less stuff to manage or clean, I can hopefully better concentrate on getting Patrick healthy and keeping Cecilia happy. We're feeling much more settled now, and ready to begin Round 2.

Patrick's hair fell out this week. He was pretty devastated, but is looking pretty fine (if you ask me) with his new buzz cut and collection of hats. I'll work on posting some recent photos, including MRI scans of his tumor (past and present), for those that are interested.

Also, Ali Winter has put together a care calendar, which has been a great way for folks to sign up/learn about tangible needs we may have (whether or not we're aware of them!), without having to interface with me about them. (I'm having a hard time keeping track of details or responding in a timely way to emails/fb messages offering help). So, if you want to bring a meal, or hang out with an adorable (almost!) 2 year old, or drive PK to NIH for a chemo appointment, sign up there. (Hopefully I can figure out how to create a tab for it on the blog, if not, I'll post a link to the website.)

We have no cell phone reception at our new place in Great Falls, so email or call us at the below land line number, should you need to reach us. We're working on getting our own land line put in, and I will send that number along, once I have that info. Others have asked for our new mailing address, so I'm including that below as well.

Blessings and peace to each of you this day,

Patrick, Julie and Cecilia Kelly
c/o Steve and Nancy Skancke
833 Nethercliffe Hall Road
Great Falls, VA 22066
703.759.4927 (temporary landline)
919.402.7264 (patrick's cell)
919.402.7244 (julie's cell)

Wednesday, September 21, 2011

"Best Wishes"

We've been told all along that the second week of Patrick's 3-week treatment cycle would be the hardest of them all. And it seems that the proverbial "they" weren't lying. It's a doozy, I tell you. Patrick's steroid-induced energy, optimism, border-line mania of last week crested and crashed into waves of fatigue, mood-swings, irritation, indigestion, constipation, flu-like aches, and just about any other potential harrowing "side-effect" one might read about on a prescription label. The poor guy is a trooper, though, and we're holding our breath that the 3rd and final week will be a wee bit more "normal", before he begins the chemo cycle yet again. 

Somewhat foolishly, we made this hard week even harder by deciding it was the "best" time to move. So, our house is officially no longer a home. Labeled boxes are stacked where framed pictures once hung. Piles of bubble wrap are hanging out in my empty fruit bowl. Moving is always hard. Moving with a chatty toddler is doubly hard. Moving with a chatty toddler and a husband with brain cancer is especially hard. (And moving three times in one year is just plain insane.) We moved Patrick over to our new place in Great Falls this week, since the ensuing chaos was getting too much for him. I'll join him later this week, once everything is packed up in our Alexandria house. The Pod arrives Thursday night, and the movers come Friday morning. So long cherished belongings - I'll see you in a few/many (?) months, when I unpack you into a house, somewhere tbd. By then, Patrick will be done with his treatments. By then I hope he'll have a clean bill of health. By then, I hope our life will make sense again: because right now, frankly, it makes no sense at all.

Friends from near and far have been absolutely amazing through all of this. Kristin Lane Mack flew in from Chicago for 24 hours to listen to me cry and ramble, and to cheer me up in the special way only she can. Dear "old" DC friends took me out to dinner, former colleagues of Patrick's wrapped up all of our art last night, while others took a few loads of our stuff over to the new place. Kate Berman packed up my spices and seminary books. Others brought meals, cut our grass, played with Ceci, and sent tear-inducing reminders on facebook that we.are.not.alone. We feel overwhelmingly blessed and grateful for all of your prayers, generosity and support. I hate hate hate that Patrick has brain cancer. But in the midst of that hate, I am seeing God's love poured out a-fresh from each of you. So, thank you.

During my seminary CPE training (Clinical Pastoral Education - i.e. hospital chaplaincy training) at Duke Univ. Hospital, we talked and read and thought a lot about how to craft a thoughtful, empathetic response to the dying patient in a hospital bed, and their mourning/fearful family members surrounding them. I often longed to offer promising hope that they would surely be fine in just a day or two (and some were). But more often than not, they wouldn't be, and we all knew it. Probably the most authentic answer to the problem of pain and the question of theodicy is something like "I know, this really stinks, I don't know why a loving, merciful God would allow something as awful as this to happen." And yet God still allows it to happen, and for some reason is allowing it to happen to us. I don't think God created cancer. I don't believe God would wish it on anyone. I do believe God grieves with us when we have cancer. I trust that God hates Patrick's brain cancer as much as I do. And I'm trying to trust in God to heal him from it, or at least give us a few more happy cancer-free years together....

I've had to recall the painful reality of Patrick's illness and the painful reality that is now our life to so many friends and strangers this week. (I'd really rather pretend that I'm packing up and moving us onward and upward into some new, fabulously cute home of our own.) Instead, when I call our utility companies, and request a stop of service at the end of the month...they always inquire as to why we're moving, and why they're losing my patronage. (I want to say: Does it really matter!?) There's really not an easy or gentile way of saying "My husband has brain cancer", even to a stranger. But I've had to say it, over and over and over again...and each time it becomes more real to me. "Best wishes" they seem to all flatly say. When potential renters walk through our house, and ask why we're moving out, and brain cancer is my answer, I'm greeted with the (now) redundant "....oh, best wishes". Best wishes on your new job or new orchid plant, but not on our "new" life! (But, thanks for the thought.)

(How should one respond to such sudden, sad news? How should I respond to the daily reminder of that news? How does Patrick respond to the tumor hanging out in his brain? How will Cecilia respond when she remembers her early years in DC?)  Perhaps I'll learn to respond with a grateful heart and steadfast faith in a merciful, loving, grieving God, who hates this cancer as much as I do, and who promises never to glibly say "best wishes", before moving into the next room.

Tuesday, September 13, 2011

pk stylin': fanny pack edition

From Ali Winter:
Here is a picture of Patrick, our super-strong, superman, cancer-fighting hero, out for a stroll with his fanny pack, ensuring there is civility and harmony in the neighborhood. And what is in that fanny pack, you ask? Why, it is full of a special form of life-saving, yet still toxic, kryptonite chemo.

We love you SuperPatrick!!

Monday, September 12, 2011

1st week of chemo...

Patrick began his first week of chemo on Saturday. It's a five day treatment, so he'll finish on Wednesday. We take him up to NIH for a rather short period of time each day to change his chemo bag, which he wears oh-so-stylishly on him at all time in a fanny-pack. (It takes a real man to wear one.) So far he is tolerating the chemo fairly well. He has to take a high dose of steroids (I believe to shrink the tumor and it's surrounding inflammation (?)), so he's all hyped up (literally) and feeling great. According to the protocol's time-line, he's expected to crash on Wednesday, so we're looking forward to that. For the first time in our relationship he functions on less sleep than I do, and talks my ear off (and the ears of anyone he runs into!) It's so strange to see him so strong and vibrant, while knowing there's a tumor in his brain, poison in his fanny-pack, and many hard days and nights ahead.

Thank you for praying, leaving various messages of encouragement, and offering your generous help. We're completely overwhelmed with the love of so many, and very thankful that we're not in this alone. So many wonderful things are happening, in the midst of this awful beast called cancer, and with each blessing, we are reminded that God is indeed good, even when cancer is so intrinsically evil.

Steve and Nancy Skancke, friends of ours from our days at The Falls Church, have invited us (and our two cats!) to live with them in their lovely Great Falls home. They have a roomy 2 bedroom basement apartment that will be just perfect for us. It's much closer to NIH, so our daily commute there and back will be cut at least in half. We're selling Patrick's car to his mom (since she needs one, and he's not allowed to drive for at least 6 mos with his recent seizures), packing our stuff into a Pod (thanks to friends who have offered to pay for our move and storage fees!), and downsizing our life for a bit, as we concentrate on Patrick's care. Others are providing meals, care for Cecilia, rides to NIH, help with packing, cleaning, and advice with all of the required (and rather confusing) HR paperwork. Our landlord is allowing us to move out of our house without any hassle, so we are thankful and very relieved at the ease of all of this, despite the internal complexity going on in Patrick's body!

So, thank you, thank you, thank you, for your generous care. We're learning to see God's love for us and protection over us each day through your prayers, gifts and love.

With hope, (and a new appreciation for fanny-packers),

Friday, September 9, 2011

Blogging about this "Adventure"

I've always wanted to blog. I love to write, but I REALLY enjoy my privacy, so writing my personal thoughts and feelings for the "whole" world to read, feels a tad uncomfortable, to say the least. But because you care, and because you like us, because you're faithfully praying for us, and, frankly, because Patrick has cancer, I've decided to blog about this. It seems a fitting way to share with you updates, photos, and prayer requests, while not overloading my email inbox. Thanks to one of JoAnn (Patrick's sister)'s bridesmaids, Gayleen, who is ultra-fabulous and ultra-with-it, we have a blog all set up for this. (Thanks Gayleen!) She's inserted the emails that have led up to this point, and share with you our initial news and updates about Patrick's diagnosis. And from here on out, one of us will try to keep you informed of what's ahead, how he's feeling, etc.

She also thought folks might like to learn of tangible ways to help us, and prayer is our #1 need right now, so we'll periodically update things to pray for, if you're the praying kind. Others have indicated that they'd like to contribute to our various needs, so she's set-up a paypal account to make that easy for you. Please, please, please don't feel obligated to do this at all. I'm mortified that it's even an option! But, I also realize that with his 50% cut in salary (he'll be on disability), and the fact that I'm at home caring for Cecilia and now him, it's going to be REALLY tough to stay a-float in DC. We're trusting that God will provide for all our needs, while at the same time figuring out ways to change our lifestyle (which will likely include moving into a smaller place) in order to make this feasible. Other fabulous friends are setting up some sort of calendar where you can sign up to bring meals, etc. Once that's established, I should be able to link it to this blog, should you want to do that. But, seriously, it's your prayers, friendship, and words of encouragement that we really need, so don't feel pressured to do give anything else!

Several folks have made mention to this journey ahead as an "adventure". I personally tend to look forward to adventures, but can't say I'm looking forward to this one (at all.) But, I hope and trust and pray that we'll not only survive it, but also thrive (somehow) through it. Thanks for being a part of it!

Patrick had his pic line inserted today, and will begin his first chemo treatment tomorrow morning at 8am. He's on his way back home, as we "speak"/write, and will spend the night here, before heading back up to NIH at the crack of dawn. He hasn't seen Cecilia in almost 2 weeks (!), so I'm really excited for them to reconnect before his treatments begin.

With much love and gratitude (and fear and trembling!),

Wednesday, September 7, 2011

Diagnosis for Patrick

Hello again -

I just wanted to send you all a (not-so) quick update on Patrick's situation. Thank you to all who have called or emailed to check-in on us. Hopefully this will answer some of your questions, but I also hope to get back to each of you personally soon! Thanks also for your prayers, words of encouragement and helping hands. It's been overwhelming how much love and support we've seen and felt over the past two (very full!) weeks.

So, the results have come back that Patrick does in fact have a return of CNS Lymphoma. The doctors are not sure if there was a remaining cell from his first cancer treatment that lingered and then recently grew and became a new tumor, or if this is something new altogether. We may or may not find that out over the next few weeks, as further cytology reports come in. But it is cancer, and NIH has agreed to treat him. That is a BIG deal, as we will have the continuity of care with his former oncologists and their staff. Since NIH uses his treatment plan for their own research, we won't have to use insurance or pay a penny for any of it. Hopefully whatever they find as they study and treat Patrick's case will help heal many more cancer patients in the future!

We received the outlined protocol today and as looming and difficult as it seems, it appears to be a bit more manageable than his last round of chemo. He will receive outpatient care this time, which is very different from his regiment 7 years ago, where he practically lived at the hospital. He'll be home every night with Cecilia and me, which will be a great help as we try to maintain some sort of balance and continuity in our family for her sake (and ours!). He'll begin this Friday, and will have treatment for 5 days straight (we go in each day for a few hours of chemo) and then he'll have 15 days "off". This will cycle 6 times and last about 18 weeks. After that, he'll have 5 weeks of radiation. Radiation is new altogether for him, and although we realize it's part of the best solution for his total healing, it may offer a harder/longer road to recovery.

For those of you who pray, please pray for the following:
--that radiation will not be damaging to his cognitive abilities.
--that cancer will not return a third time (it would then likely be untreatable)
--that the chemo would be effective (and not as nausea-inducing as last time!)
--that we'd be able to survive in DC on his reduced disability salary. (We're expecting we'll have to move into someplace smaller/less expensive, until he's able to bounce back up to his full salary after treatment. This will be our 3rd move in one year!)
--that our family will weather this storm, and draw closer to one another and God through it!

If you don't have our phone numbers, message me, and I'll be sure to get them to you. I know Patrick would love to hear from you!

For those who are local, and who want to visit, please do! It seems to really rally Patrick's spirits, and keeps him feeling connected to the rest of the world. Just check-in with me to see where he's at that day/week. We're not sure how he'll feel through the various cycles of treatment, so please don't be offended if we say it's not the best time to visit!

Also, feel free to forward this to anyone who may be interested in learning more or praying for Patrick.

Thanks again!