Back to Camp Chewonki

When I (Andrew) was 13, my parents shipped me off to an 8-week summer camp in the middle of the Maine wilderness.  In hindsight, I have fond memories of the Maine woods and the beauty of God's creation that I experienced there.  But at the time I was not a happy camper.  I think I was most depressed about turning down my position on the baseball all-star team that summer.  A close second to that was the fact my mom took me in for a buzz cut, the one and only of my childhood, the day before leaving for Maine.  I apparently protested by wearing a towel over my head to the dinner table that evening and giving everyone the silent treatment.  I've been thinking back to the pre-Camp Chewonki trip to the barber's as my hair started falling out in earnest a few days ago and I decided to go for a pre-emptive strike...yes, I went in - of my own accord - for a butch cut (1/4" in length).  It's a bit of an adjustment but no towel at the dinner table last evening and lots of good conversation!  I think it's been most noticeable to the kids, who've never seen daddy with super short hair.  Although I can't say I'm thrilled with the new look, I take solace in the fact that the death of the rapidly dividing cells that produce hair should also mean the death of the rapidly dividing cancer cells in my chest.  This is what ultimately matters and what we're praying for each and every day.

Forest Bathing

So it turns out, according to research pioneered in Japan, that breathing the natural emissions of trees and plants in forests boosts the human immune system and specifically the body's cancer-fighting cells (by 50% after a couple days of walking in the woods, according to one study).  The Japanese consider this therapy and have coined the term "forest bathing" to describe immersion in the forest air.  A colleague at work turned me (Andrew) on to this this, making our planned post-Christmas get-away to the mountains of western MD that much more meaningful.  So, in addition to the stress-reducing effect of getting away from it all and soaking up nature's beauty for a couple days, the production of cancer-fighting cells inside me should be in high gear!  Planning to bathe in the woods as many weekends as possible going forward.  Thankful for time in the mountains as a family and for a wonderful Christmas celebration over the weekend with all three of the kids' living grandparents here to visit.  Continuing to feel strong physically and our family uplifted by the thoughts, prayers and acts of service of so many.  Hope all are enjoying a blessed holiday season!  

A Set of Singles - Just What the Doctor Ordered

Well, not exactly, but they did say I (Andrew writing) could give tennis a try if I was feeling up to it and, with the day off, I enjoyed a full hour of men's singles this afternoon.  Can't say I was in mid-season form but overall it felt really good to be out there playing and hitting the ball well once I got my feet moving.  By the time the sweat dried, back at the ranch, I have to say I felt absolutely exhausted and ended up taking a long hot shower and lying down on my bed for a while to recover!  Turns out the Neulasta shot that I got on Monday - to boost the body's production of white blood cells, which had been depleted by the chemo - has left me with not insignificant, persistent aches and pains in the hips, lower back and various other joints around the body.  Hoping that, by tomorrow, all that will have passed and we can focus 100% on celebrating Christmas!  Thankfully, we have both Christine's parents and my mom here with us, making the kids even more excited than usual about what the big day will bring.  The week ahead will be a welcomed respite from any form of treatment, including some time in the mountains of western MD, with just one appointment (next Friday) to discuss how the first round went and look ahead to the second with the Virginia Cancer Specialists team.  We will take the opportunity to discuss with them the advice we received at Hopkins.  Thanks to all for the ongoing well wishes, prayers and support from near and far - we draw strength, encouragement and a deeper sense of peace from all of you. 

Lymphoma 101

Thanks so much for the texts, calls, emails & prayers!  The meeting at Johns Hopkins was incredibly useful today.  The doctor spent a lot of time with us and he started by explaining a bit more about this curious disease Andrew has. Blood cells are the fastest dividing cells in our bodies and there are literally billions of them.  Because they are duplicating themselves constantly, and because this is no simple process, it is not uncommon for the cells to be mutated over time.  As the doctor said, "For those of us in the lab, it isn't a question of why they  [the cells] make mistakes, but why they ever get it right!"  (Sounds like an Intelligent Design argument to us...) He basically went on to say there is so much the experts do not know about this disease.  And while one can see the tumor and how it reacts to the treatment AJ is undergoing, AJ's tumor is only the tip of the iceberg and there may be no definititive way to ever know if all of the lymphoma cells are eradicated from AJ's body. A sobering thought.
However, he agreed with Andrew's course of treatment (ya-hoo!) and stressed the importance of being willing to change (i.e. ramp up) treatment in February if the tumor isn't responding to the R-EPOCH.  He's given us some things to mull over and we'll need prayers for discernment and wisdom, as well as for clear conversations with our Virgina Oncologist in order to be ready to make decisions to change course if need be. (Of course we are hopeful it won't come to this.)
Meanwhile, Andrew is extra achy tonight (still feeling the Neulasta shot)!  This is a bummer as he hopes to play tennis tomorrow, not to mention get a good night's sleep tonight. Sorry for the intensely medically minded post tonight.
PS. I got in a swim today...  Thanks!

Asking the tough questions

Well, Andrew continues to feel strong!  He's putting in full days at work and bothered only by a bit of back pain and other minor bone-type aches that we suspect are the remnants of Monday's shot.  Hopefully tomorrow he'll be 100% (and with a smaller tumor!)
Tomorrow (Thurs) we head to Johns Hopkins to meet with a blood/bone marrow oncologist for a second opinion. I am absolutely dreading this.  I do not want to wake up at 5:45am!  I do not want to drive over an hour to get to Baltimore by 7:30am.  I do not want to learn that our insurance doesn't cover second opinions.  I do not want to encounter conflict, say, if this doctor tells us everything we're doing is wrong/dangerous/useless.  And I most definitely do NOT want to ask the tough questions like, "So what are our options if this treatment doesn't work?" "What do we do now so we don't preclude future treatments (e.g. a bone marrow transplant) should the cancer come back?" 
I want to believe that what we are doing is right on track; that we don't need to worry; that we can have total faith in all this confusing medical stuff.  But we all know this isn't the way it works.  Life is messy and complicated and sad. And we cannot control the future.  Fortunately, Andrew and I believe in a God who does hold the future in His hands and He won't be surprised by any of the answers we get tomorrow even if we are.
So please pray that we have a "good" meeting with this doctor. We'd like to be able to "track" with him and to feel as if he has thoroughly reviewed all the materials we FedEx-ed him earlier this week. We'd love for him to confirm the R-EPOCH course of treatment. But we'll take prayers too for the small details like a good nights sleep, sweet time together in the car, no additional tests (i.e. blood drawn) for AJ, a chance for me to swim tomorrow. 
Thanks as always for all the meals, calls, emails, and Christmas cards!  It is indeed awesome to feel so loved.

Who are the 70%?

In the whole "We are the 99%" debate, Andrew & I have been struck by the fact that everyone in the USA is in the 1%, given a global perspective.  Perhaps it is like this with the 30% of patients who have side effects from the Neulasta shot?  While Andrew has headed off to work today still "feeling great," it is clear that the Neulasta shot yesterday has taken a toll.  He has felt a general achy-ness and soreness that could only be from this shot.  He's tired in the afternoons at work, but that might be simply the "it's 3pm, I have a lot of reading to do, and I didn't have much coffee this morning."  Yesterday a grande latte solved this. He's beat at night, but perhaps that's just normal fatigue hitting him in front of a toasty fire after an engaging day at work? [Are we too optimistic?] True to a Jones, Andrew continues to sleep pretty well.  Foods with flavor taste better than those that are bland, so we'll have to be creative about serving Christmas dishes that appeal to both grandparents & grandsons who prefer the mild and Andrew who - now for the first time  - can take the heat of chilis! But if this is our biggest concern over the holidays, we've got nothing to worry about.

It's beginning to look a lot like Christmas....

Well, the dreaded day without steriods has come and gone and Andrew still feels great!  We are so relieved and so thankful.  Minor things plague him, but none of the drastic fatigue that we feared would start today (Sunday). We know this might be right around the corner, but for now, I (CJ) am so pleased to have had a "normal" weekend. Andrew losing his taste for wine and coffee may not be "normal," but watching sports on TV and telling the kids to stop snacking on chocolate and eat fruit instead certainly is!
Tomorrow morning Andrew returns to the hospital to get blood drawn and to get the Neulasta shot, an injection that helps build white blood cells to replace those whacked by chemo.  "In the studies, 30% of patients had bone aches associated with this shot," I learned at chemo class.  However, every single person we've talked to who is familiar with this injection has told us ominously, "Oh....  that's the shot that's worse than the chemo."  Yikes. So we're praying that Andrew can ward off any pain with Advil or Tylenol and stay awake enough to be productive at work.
Still, gifts keep appearing thanks to super generous friends and neighbors. And like when we lived in Africa, friends just stop by to say "Hi," which we love.  Two things I have learned this weekend: 1) folks really don't mind if you come to a party without a gift [really!!] and 2) your friends really do read your comments on Facebook. [a friend came with a bow for my unadorned wreath; something I mentioned offhandedly on FB last week. :)]  So, it's beginning to look and feel like Christmas around here, for which we are exceedingly grateful.
And don't forget to keep praying for us. We're going into the period when Andrew is most vulnerable to fatigue, bone aches, and infection.  So while we're optimistic his general good health will carry the day, we also know what to reasonably expect.  Thanks all for reading and supporting us!

Untethered!

Andrew writing this evening. Cleared the 1st hurdle of treatment this afternoon, getting through the 1st cycle of chemo-immuno therapy, and the reward was the removal of all the tubes going into the mediport in my chest and the accompanying fanny pack (full of battery-charged pumps and chemicals) on my hip. A great feeling to have shed that, at least for the next couple weeks. I've continued to experience only minor side effects, thankfully, and feel strong this evening. I've actually been ravenous all day today for some reason, devouring a second breakfast of Trader Joe's turkey jurkey (come again?) at 9:30 in my office and having a second helping of pulled chicken, string beans and yellow rice tonight for dinner. At the same time, I have lost my appetite for certain things, for example coffee, which prior to this week has been the first thing I've reached for in the morning ever since becoming a father! Clearly the medication is running through the system and throwing some things off - most importantly we hope and pray each day that it's obliterating the cancer cells in my chest. I actually have felt a bit of shifting/slight discomfort in my chest, in fact, which the doc attributes to the tumor shrinking and thereby relieving pressure on the surrounding organs. Weekend plans include getting some exercise and fresh air with the family and a bit of Christmas shopping. Taking it one day at a time...and feeling tremendously supported by friends near and afar. It means a ton to us. Thanks! 

Countdown!

Teach us to number our days, that we may gain a heart of wisdom. Psalm 90:12
Let me tell you - we are certainly numbering our days!  Andrew cannot WAIT to give back his "not so little" friend tomorrow afternoon.  This has been the longest week! Tomorrow afternoon he'll get one last dose of intense chemo (Cytoxin) before handing over his pumps & empty IV bags.  No more chemo for the rest of the year! Then we pray that any side effects are mitigated by the maze of pills he's been instructed to take. Even so, we are expecting a low-key weekend.  If we make it to your Christmas party, that's cause for huge celebration! (Just be warned, we come empty handed....)
Although we are nervous about how Andrew will feel over the weekend and into next week, we are THRILLED that he continues to feel strong.  (Which is good because only he is truly qualified to help Darcy study for Algebra and Nate for Personal Finance. Both have end of interim period tests tomorrow.)
And again, it feels like Christmas here despite my lack of shopping or decorating!  Folks drop off care packages, treats and fruit leading Evan to say (after prefacing it with "Of course Dad's going to be healed...") "Dad's being sick is now OK; it's not BAD (anymore)."  Thank you all for spoiling us and our kids!

Back to School

On his third straight day of chemo, Andrew continues to feel great! We are so thankful.  But it's been a sobering day as the reality of the disease and the treatment set in.  I (CJ) went to "Chemo Class" this morning and spent 3 hours listening to all the potential side effects of chemo.  And while every case is different, the nurse would more often than not turn to me and say, "Now, with your husband's treatment [of 5 days of straight chemo], he is likely to have [fatigue, nausea, bone aches, you name it.]  I left feeling nauseous, dizzy and with a nasty headache!
Now, don't get me wrong, we are SO thankful for this class and for the nurse leading it.  I guess not every treatment center offers this?  The nurse did an excellent job of describing the details of AJ's treatment, including deciphering the cryptic instructions on all the pill bottles we now have. (Who knew that PO means "take orally"??) And she made me feel ok about feeling overwhelmed by it all. 
Of course I then had the rest of the day to process all of this. But as Andrew and I went over it all this evening, he took on the mantle of being overwhelmed.  It didn't help that I then went to a Christmas party and came home to find him on Google reading message boards where folks have posted about their experiences with chemo side effects!!!
And yet despite feeling overwhelmed, we are indeed thankful for many little things, mostly related to perfect timing.  A friend who ran errands for us, a ride to the hospital, a ride to a party, dinners that arrive hot, fruit arriving just in time for dinner, a perfect bottle of wine, and on the doorstep when I came home from class today: a selection of chemo appropriate treats in a big red basket! And this is just a sampling. Thanks to all of you for surprising us with your gifts of service, your actual gifts, your emails & calls & texts, and your prayers!
Here's to a good night's sleep!

The Third Wheel

Andrew and I were never converts to the Dr. Sears method of baby-raising, where newborn babies sleep in bed with you.  So we're not super excited about having Andrew's chemo sleep with us at night either.  The pack of three medicines and their two pumps weigh about the same as a small newborn and make a frustratingly irregular humming noise every 10 seconds or so.
Thanks to all of you who have sent chemo advice! The good news is that so far, Andrew still feels pretty good.  His stomach feels a bit "off" but nothing major, for which we are thankful. The oncologist today was very encouraging, saying that if you feel ok after the first day, you're more likely to avoid many of the serious side effects later on.  We should still expect hair loss and fatigue, but maybe we'll avoid the flat out debilitating nausea and vomiting.  Perhaps this is sugar-coating it for us a bit, but we'll happily eat this candy until further notice!

"They obviously don't know the Jones boys!"

We were told that Andrew would have trouble sleeping, based on the prednizone (?) he is taking.  But as Gordon (brother) commented, this is the man who slept 9 hrs at 16,000+ ft in blizzard conditions with two other unshowered brothers in a cramped tent on Kili! So we are thankful that last night Andrew was able to get a good night's rest.  In fact, so much so that our whole household overslept this morning! 
We are also thankful that you are reading this blog!  Hopefully it will help you know how to help and pray for us (that AJ & CJ have normal, productive days at work today). And if you are not usually a "pray-er" maybe it will help your understanding of why your prayers are important to us as we battle this cancer!  Thanks everyone.

Can I have a seat on the aisle?

OK, the first day of chemo was a long slog!  To me (CJ) it felt like a long transatlantic flight from a seat in the center aisle: no sunshine, mediocre food, attention from "flight attendants" just as Andrew's drifting off to sleep... We emerged after 7 hrs later dazed and confused, feeling a new form of "jet lag."
However, we can report that Andrew's body tolerated all the chemo meds well and thankfully for the moment, he is having no real side effects.  Thanks to a large dose of Benadryl, Andrew slept for much of the morning. (Meanwhile I was having flashbacks to when we gave Darcy & Nate Benadryl on a flight from Nairobi - London assuming it would help them sleep.  Disastrously, it had the opposite affect and we spent that flight chasing them up and down the aisles.  Now we know that the hyperactivity reaction gene comes from the Norlings....)
Now we are home and Andrew has a new "friend" around his waist, a "larger than what we were expecting" fanny pack to hold his three chemo meds. To continue the analogy of the trek, Andrew feels as if he is carrying provisions for a three day hike! The nurse assures us we'll get used to it, but the wires, tubes, and straps have us baffled and cautious. 
Tomorrow at 4pm Andrew returns to the hospital to get the fanny pack "refilled."  But since they want to keep him hydrated, this 5 minute visit will now be an hour.  :(  So, I'm looking for a ride to the hospital to meet Andrew there and drive him home!  Thanks for letting me ask!  (And yes, we already have food coming tomorrow!)
So what are we thankful for today? Friends & family who checked in via phone or email or text and their grace in understanding when we don't respond! No allergic reaction to the chemo! Friends who bring dinner! Good hospital care! Three kids who keep us laughing.  And a fabulous fire using wood from the oak that fell on our garage 3 years ago.  And you - especially if you are still reading.

Our friends like to cook!

Our local friends really must love to cook as so many of you have asked about bringing meals this week.  I don't want to curb this enthusiasm, but for now I think we are set.  Carolyn Doolittle is bringing a hot meal tonight.  And Tues - Thurs I'll be home in the afternoons and I think cooking/being in the kitchen with the kids will be one way to keep some normalcy in our lives during this crazy time.  We're not sure about Friday (when AJ will again be hooked up for several hours of chemo), but honestly, that's too far ahead for me to even ponder as I go out to start the car to warm it up for the drive to Arlington....  xoxo

"You have cancer and you're going for a bike ride?"

It's true! Andrew has cancer and starts chemo tomorrow!  And yes, we went for a bike ride today, much to Evan's surprise.  And despite AJ being the one with the 15x8cm tumor pressing against his heart and lung, he's the one out in front while I (CJ) labor to catch up with him!
So, chemo tomorrow. It will be a slow start as they administer the first drugs slowly to monitor for allergic reactions. And then the rest of the week Andrew will receive more drugs via "infusion," which means Andrew has a walkman size pack of chemo that he wears until Friday. (For those of you in the know, this is an "R-EPOCH regimen.)
I plan to sit with Andrew if they let me, even as I have no idea what to expect.  My dream is that it's a bunch of leather recliners and we can relax, chat and get some work done.  I imagine it is more like the beauty parlor where all the patients are lined up as if under the hair dryers.
And we feel really cared for! Friends bring meals, take our kids, send emails, etc. Most importantly, this afternoon a group of friends came to pray for Andrew and to watch him be anointed by oil. For those of you from different faith traditions, this is an ancient symbolic act to ask God for protection and healing.
So, as we start treatment tomorrow, we appreciate your prayers.

We broke down and started a blog...

When you've moved around as often as we have, you have a lot of friends and family scattered across the globe and it's hard to keep everyone up to date on what's happening with Andrew! Now we know why people hire PR firms! So, even though it seems that blogs are reserved for exotic travelers, politicos, or the seriously seriously ill (Andrew looks and feels fine!), we're charting new territory as bloggers.  But since we're charting new territory anyway as we learn all we can about large B cell lymphoma, what the heck!?