Steady As She Goes

“Steady as she goes, Mr. Sulu”

Hi, Folks.

Thanks to everyone who has been checking on me lately.  Since I’ve been on medical leave from work, I know I’ve been pretty bad at keeping in touch.  Sorry!  Your timing is impeccable as always.  I had a scan last week, which is what it usually takes to remind me to shoot out an update.

For the last three months, I’ve been taking (4) chemo pills each day.  There’s really no good, catch-all description for how I’ve been feeling.  It’s been pretty tolerable; better than some chemo I’ve had, worse than others.  Never know how tired I’ll be when I wake up each morning.  Thankfully, since I’m on med leave, I can stay in bed a bit longer if I need to.  That’s a real blessing.  I know you’re all envious.

Usually, people have to take a break from this particular chemo regimen after a couple months because blood counts drop and need time to recover.  Happily, even after all these years of treatment, I made it a good 3 1/2 months before hitting that wall. (I’m sure it’s only by God’s grace…and maybe the nutritional supplements I’m taking.  More on that later).  My red blood count has been in the anemic range for a year or two now, so I’ve gotten used to living with that.  But, eventually my other blood counts dropped, so I just finished enjoying a nice two-week break.

The scan showed some improvement overall.  Nothing earth shattering, but enough to say, “OK, let’s keep going (since we don’t have any better ideas at the moment).”  So, we’ll go another three months and scan again.  I guess that’s mostly a good thing – much better than a bad scan, of course.  But, honestly, I was hoping for something more exciting, more definitively positive to motivate me to continue.  Beggars can’t be choosers, though.  I’ll keep popping the pills.

Speaking of pills…I’ve also been taking some nutritional supplements that I can actually feel good about swallowing.  Some of you have heard about a shake that I sip throughout the day.  It’s a concoction of glyconutrient powders and pills from a company called Mannatech.

Every morning, I sit down at the kitchen counter and start mixing up The Shake.  Some water, cranberry juice and all the Mannatech goodness.  Some are just powders I scoop in.  Since I have swallowing trouble, I pour in the contents of the capsules that can be opened.  Then, Jill uses a pill crusher to break down the solid tablets (since my hands are still having nerve pain).  Add some ice, run it through the blender and – voila!  I try to drink a few swallows every hour or two, since they say it’s best to have in small, steady doses.

One of the supplements has a veggie taste, which didn’t get along well with the cranberry juice, so I’ve been drinking that one in hot water like a soup broth three times a day.  It’s not bad, really.  Add a pinch of salt and a piece of bread and it’s a nice snack.  Another supplement has to be chewed and then dissolved in your mouth 6-8 times a day.  I keep the bottle handy on the side table by my well-worn spot on the couch, but I still often forget.  At least it has a decent taste when I remember.

The Shake recipe also calls for Soy Lecithin, which adds a nice Pina Colada flavor.  However, it also seems to thicken the consistency and fills me up, so I’m sometimes not hungry at meal times.  But, I’ve been trying my best to eat all I can, whenever I can.  Kinda fun, actually.  Again, I bet you’re jealous.  Hope my metabolism never slows down or I’ll be in big trouble!

So, is it helping?  Hard for me to say.  I’ll admit up front that I’m VERY stingy handing out endorsements for this sort of thing, especially when recommending to others based of my personal experience.

Over the years, my body has broken down in so many ways that I’ve grown accustomed to an overall feeling of perpetual poor health.  Each day is different – one part temporarily stops malfunctioning, while another part decides to act up.  So, it’s difficult for me to pin point when something actually improves.  I’ve just learned it’s generally easier to not take much notice.   Jill is a better objective observer.  She says things like, “He went out of the house on an errand for the first time in months”…and…”He answers me in complete sentences, instead of yes/no grunts!”  So, you can take that as a positive product review.

I’d love to be able to tell all our friends that this has solved all my problems and that they should try it, too.  But, I can’t just yet.  The question is – Why do I feel better?  Is it the Manntech?  Probably – at least to some degree.  Or is it the new chemo regimen fighting back the cancer, which had been making me feel so badly?  Yes, probably that, too.  It’s an odd situation:  In one hand, I’m taking toxic chemo pills four times a day…and in the other hand, I’m drinking this intense health shake.  Are they neutralizing each other?  Maybe they’re working together.  Just don’t know.  I feel comfortable saying that The Shake is at least helping me withstand the rigors of the chemo.  We’ve committed to this experiment for at least six months to give it a fair chance.  We’ll see where it goes from here.

Besides the “usual” effects of chemo, the biggest challenges continue to be nerve pain in my hands and feet, along with the decreased scope of vision from my mini-stroke a while back.  I never knew how much I actually used my fingers (and toes, surprisingly) throughout a normal day until the slightest touch announces itself  like grabbing an electrified fence.  To some degree, you grow accustomed to it.  But, its relentless presence can be wearying.  Thankfully, it’s improved lately since I started taking Alpha Lipoic Acid, an OTC antioxidant that’s been shown to help in clinical studies.  Hopefully, it keeps getting better.  I’d love to be able to play the bass or acoustic with the band at church again.

I’ve mostly gotten used to my damaged vision, too.  But you can understand how having a blind spot in both eyes could be a problem with reading, using a computer, chopping vegetables and other unimportant things, like not hitting pedestrians while driving.  It’s not really getting any better, but each day I spend time re-training myself to read.  They say that can help nearby areas of the brain grow stronger and compensate for the damaged part.  If that works, maybe I’ll work on retraining my sense of humor, too.  Don’t get your hopes up, though.

We had a nice week away in the White mountains during Grace’s school vacation in April.  I just relaxed and enjoyed the view from the deck while the girls went off hiking.  It was a nice change of scenery, since I mostly hang around the house these days.

White Mountain Vacation

Summer plans looks good.  In June, we’re renting a nice beach house in Kennebunkport for a week with my parents and brothers.  Always great to spend time with them.  Then, in July, Jill is off to India for three weeks – her fifth time!  You can follow her progress on her blog.  Grace will be visiting my parents in Florida during the same time, so it will just be me and the dog here at home.  I don’t mind, though.  It’s a pretty rare thing to have extended times of real silence in our non-stop, always-connected world these days.  I’ll let you know if the dog starts talking to me.

Out with the New. In with the Old.

"Think we can eBay any of this stuff?"

I know it hasn’t been long since the last post, but enough news-worthy events have occurred to justify an exciting new episode.  Whoa…back up.  I hope you all had a great holiday season and actually got to rest and spend time with your families.  If not, it’s never too late to make that happen, right?

So, the ugly truth is that it’s been another TOUGH three months since the last update.  I’ve been feeling worse in all sorts of ways.  The neurologist believes a small stroke caused my recent vision loss, which may or may not improve.  I finally had to quit working (even from the couch).  I spent Christmas Eve well into New Years in the hospital while multiple doctors attempted to diagnose and treat a bacterial infection that we’re pretty sure wasn’t even there in first place; it was just a contaminated blood sample.  They ended up removing my beloved port-a-cath, thinking the bacteria had attached itself to it.  Then, they had a very hard time getting a new central line into me, which is essential due to my war-ravaged veins.  After several unpleasant procedures, I have a new port-a-cath (which, on the good side, can be used for CT scan injections).  Did I mention that Jill and Grace were in Florida visting our parents all this time?  It made me appreciate that much more all Jill does in countless, uncategorizable ways to help keep me alive.  Could NOT do it without her.  I think her smile does me more good than most of the meds I take.

They sent me home from the hospital on IV antibiotics, which Jill graciously administered (through my shiny new port-a-cath) every day at 6am, 2pm and 10pm – not exactly my ideal sleep schedule.  Boy, we’re glad that’s over.  Especially since we’re pretty sure it was all for nothing; I don’t feel any better than before I went into the hospital.

Through all this, I had been on the new Adcetris treatment.  But, a scan Thursday showed that it hasn’t helped.  The cancer was already scattered throughout my body.  But, now it has progressed, especially in the liver, lungs and bones.  While it’s disappointing that the new drug hasn’t worked, it’s also helpful to know that I’ve been feeling so badly simply because the cancer is doing whatever it wants.  We’ve been banging our heads on the wall, working with countless specialists to figure out why I’m like ‘death warmed over’, so it’s almost a relief to have a pretty definitive answer – it’s the cancer’s fault.  Fix that and I should feel better.

"The handshake always gets 'em."

So, we’re saying goodbye to Adcetris, the young puppy upstart in the Hodgkin’s neighborhood, and saying hello (again) to some older drugs.  Sometimes, the old tricks the old dog already knows are enough – at least, that’s what we’re hoping.  I’ve had these drugs before, but not in this combination.  And it’s been 8-9 years since the cancer has faced them, so hopefully they’ll take it by surprise and blow it to pieces!  It even has an invigorating-sounding name, PEP-C.  I could certainly use some pep.  One positive is that they’re in pill form, so I won’t need to go in for long IV sessions.  We’ll just have to watch my blood counts and ease up the treatment schedule if they get too low.  We’re also glad to see the Adcetris go since it made my hair fall out (hence the new cue-ball  look, which Grace loves because it makes me look like her Uncle Tim) and it gave me significant peripheral neuropathy, where my hands and feet fluctuate between “numb and tingly” and “exploding knives.”  Not helpful for sleeping.  That’s supposed to get better with time, now that I’m off the drug.

It still seems like we’re adding new doctors every week, but the main focus now is to knock the cancer back on its heels, so I can get my strength back.  Then, I’ll let the specialists do their thing, trying to fine-tune me into a perfect human specimen.  Maybe they’ll set me up with some bionic super powers like The Six Million Dollar Man.  I think I’d enjoy that.

If you read this far, congratulations.  I know it was mostly bad news.  You’ve been a good sport.  Despite what are often insanely bad strings of days, we’re hanging in there.  Our trust is in God.  Despite all evidence to the contrary, we know He has never left us.  And our trust will remain with Him until the end, regardless of the outcome.

I know many of you pray for us with a special, never-doubting, “Nate WILL be healed” kind of faith.  We so appreciate that.  I apologize if my updates don’t exactly fit that kind of belief.  Please keep up the prayers.  We might not see exactly eye to eye on the details, but we know God is good and His mercy endures forever.

One last thing, if you haven’t already, consider signing up for email notifications at the bottom of the page.  It will help make sure we don’t lose track of each other.  Oh, and even though I usually don’t reply, I DO read and am encouraged by all the comments you leave.  Thanks for being on our Team!

Humpty Dumpty

Well, the cancer part of this update is actually pretty easy to sum up – A scan last week showed the cancer has progressed and the current chemo has apparently “lost its magic” (as my oncologist would say).  Thankfully, a brand new chemo we’ve been (semi)patiently watching in clinical trials has finally been given the green light by the FDA.  It’s the first new treatment to be approved for Hodgkin’s in 30 years.  Unlike the daily chemo pills I’ve been taking, this one (Adcetris) is your standard IV infusion every three weeks.  We’ll see how it goes.

A Nate Update can’t end that quickly, though.

You know I generally try to put a cheerful spin on the gory details of my health.  But, I have to be honest.  It’s been a tough six months.  The years of treatment are really catching up with me.  I’ve entered “survival mode” where we’re jettisoning all non-essential cargo so the ship won’t sink.  Just focusing on the basics – eating, sleeping, Dr appointments and trying to keep working.  (I admit – I enjoy the eating and sleeping part.)  Multiple body systems are falling apart and I keep adding new specialists to my already impressive list of doctors.  They do their best to patch me up (sort of like Humpty Dumpty), but there’s only so much they can do.  The best analogy I can think of is the story of the little Dutch boy who puts his finger in the hole in the dike to keep it from flooding the city.  In my case, the story is a little different.  The boy puts his finger in the hole…but, then a new hole pops open and he has to put another finger in that one.  And so on and so forth, until he runs out of fingers and has to start using his toes.  That’s pretty much the feeling we’re getting around here.  None of these issues are matters of life and death, but the endless doctor appointments (not to mention new meds and procedures) are becoming a full time job.  (That reminds me – BIG thanks to the guys at work who continue to let me work from home and put up with my abbreviated and unpredictable schedule.)

Dermatologist (More skin cancer removals)

Ophthalmologist (Blind spot in my vision.  Having brain MRI.  Try writing a coherent email – or blog! – when you can’t see the word you just typed)

Urologist (When you ingest poison on a regular basis, you want to be sure it can get out of your system)

Calligraphist (You wouldn’t believe how my penmanship has slipped since 4^th grade)

Oncologist (Sanford)

Oncologist (Boston)

ENT (Swallowing trouble)

Clown from Cirque du Soleil (to lighten up the mood)

Occupational Therapist (Lymphedema swelling in right leg)

Gastroenterologist (Possible GI bleeding causing low Iron, which in turn is causing significant anemia and resting heart rate of 120)

Dentist (I know we all have one, but I’m racking up some serious frequent flyer miles)

Pulmonologist (Radiation pneumonitis lung issues; although this is currently better than it has been in awhile)

Naturopath (He covers things from a different angle)

Psychiatrist (Just kidding again….for now)

And in the miscellaneous category…my fingernails crack if you look at them cross-eyed and I had the shingles (for the 2^nd time).

OK, I’m done.  That’s all I can think of for now…and probably more than you wanted to know.

Have I mentioned that Jill is a true saint?  Seriously.  You’ll never know.  And, my ten year old Grace still loves to snuggle with her Daddy.  I’m a blessed man.  Oh, and although I’m a slow reader, I made it through Crime & Punishment and The Brothers Karamazov by Fyodor Dostoyevsky and A Day in the Life of Ivan Denisovich by the late Alexander Solzhenitsyn.  When your typical triumph is getting showered and having breakfast, it’s small victories like reading meaningful (and often long) novels that make your day ; )

I’ll close with a Hats Off section.  My young hero, Cait, is handling medical challenges (liver transplant) much better than I did at her age.  Go, Cait!  And my friend, Jim, recently had quadruple bypass surgery that we’re all hoping will solve his long-time poor health.  These two (and their families, vicariously) have been through some tough times, but they’re “still standing.”

Thanks for reading, as always.  And, bundle up.  I hear Winter is coming…

Summertime !

Hello, Friends.

It might seem like a distant memory already, but we hope you had a great 4th of July and were able to reflect on the freedoms we enjoy here in America.  Although times are difficult for many in our country, we still have much for which to be thankful.

"Where's Nate?!"

Those of you who live nearby may have noticed that I’ve ‘dropped off the radar’ lately.  It’s been a rough few months – coughing, fatigue, fevers, difficulty swallowing, soaking night sweats.  Why?  Best guess is a simultaneous flare up of the cancer and pneumonitis.  Not pretty.  Thankfully, the job God has blessed me with allows telecommuting, but even that has been a challenge, working just a few hours on the laptop from the couch before needing a nap to recuperate.  The decision to take an extended break for the first time from serving in music and leadership at my church was especially difficult, but definitely necessary.  My heart-felt gratitude to those who have picked up the slack created by my absence both at work and church.  It is much appreciated!

After many trial-and-error experiments with various medications, things seem to be improving.  At this point, fatigue is the most noticeable problem remaining, but I’ve been able to start going into the office a few days a week.  Apparently, my hemoglobin levels aren’t stellar, but despite the doctor’s advice, I’m hesitant to add another drug to the list for that.  I can be a difficult patient sometimes.  Ask Jill.

As you well know by now, we’ve (re)tried all the standard Hodgkin’s treatments.  The most recent chemo contender, Affinitor, was actually designed for kidney cancer.  But, a change in my employer’s insurance plan meant that was no longer covered, so I had been off treatment for three months (which likely explains the Hodgkin’s flare up).  After some heroic efforts by my oncologist’s office, the chemo manufacturer (Novartis) agreed to provide the medication free-of-charge on a ‘compassionate use’ basis.  Say what you like about the ills of big business, but we certainly couldn’t cover the $12k/month Affinitor bill!  Thank you, Novartis!

Past experience with this chemo taught us that it works partially, but doesn’t knock out the cancer everywhere.  So, this is only a temporary game plan.  We’re looking ahead to the fall when the FDA is expected to put their seal of approval on a new Hodgkin’s chemo, Adcetris, that has done well in clinical trials (none of which I qualified for).  Hopefully, the Affinitor will get me by until then.

We recently discovered a co-pay assistance program provided by the Leukemia & Lymphoma Society that reimburses many of the expenses of being a cancer patient.  You can imagine (maybe) the number of different doctors whose golfing habits I personally sponsor.  The family budget breathed a sigh of relief when we were accepted into the program and began receiving some financial aid from LLS.

Just to keep things interesting, a few lumps showed up on my neck and scalp recently.  In a oddly refreshing way, they weren’t Hodgkin’s – just a couple different types of skin cancer.  So, I had them removed and am no worse for the wear (other than waiting for my hair to grow back over the Frankenstein scars).

Many of you have been helping out with projects around the house and we really appreciate it, especially Jill.  She does so much to keep our family running, while I play ‘professional patient.’  Just one example of your kindness…Recently, a friend called about repairing our quirky washing machine…

Friend:  “I’m pulling in your driveway with a part that should fix your washer.”

Me: “Great!  Come on in!

What does he have in his truck?  A brand new high-efficiency washer.

Friend:  “Think this will fix it?”

Jill and Grace will be off to Lithuania for a few weeks in August to visit Grace’s birth-grandmother.  That should be an adventure!  The trip would be a bit too much for me, so I’ll stay home and keep the dog company.  But, I’m not worried about my girls – they’re veteran travelers with a trip to India already under their belts.

Enjoy the rest of the summer!  I’ll try to behave myself…

Nate, Jill & Grace

Valentine’s Edition

Hello, Friends.

It’s been awhile since I’ve whipped up a Nate Update.  I’m sure you’ve been holding your breath with anticipation.   Most folks have their hands full enough sorting through their Inbox, so I try not to intrude unless there’s something newsworthy to report.  However, enough minor events have accumulated over the last six months or so that “Wait any longer, no longer I can” (Yoda-speak) or else I’ll be writing a Nate Novel that would put you to sleep before reaching the end.

So, I bring you this Valentine’s Candy Heart edition of the Nate Update…

Since Hodgkin’s is a Lymphoma, one of the side effects can be impaired flow of lymph fluid through the body.  Even if a cancerous growth is stopped in its tracks by treatment, it leaves behind a damaged lymph node that now blocks lymph fluid instead of moving it along.  It seems such a situation has developed in my right hip, which caused that leg to swell and led to an infection back in August with all the usual fun stuff (fever, chills, hospitalization, antibiotics).  Afterward, I did a few weeks of therapy to reduce the swelling, which involved having my leg tightly wrapped with high-grade ACE bandages by a professional “mummifier.”  It was quite a treat.  They say this sort of condition is chronic, so now I wear a compression stocking (aka glorified panty hose) over my entire right leg to keep the swelling down.  No teasing when you see me in shorts this summer.

The Radiology techs at Dana Farber tell me that I’ve had ~35 PET/CT scans!  On one hand, it feels good to have some sort of bragging rights, like my picture will soon be on their wall as “Patient of the Month.”  On the other hand, I don’t literally glow in the dark, but one does wonder ‘where do you draw the line?’  Not much can be done about it though, since there’s really no other way to measure treatment effectiveness with my condition; a simple blood test won’t do the trick.

My recent scans initially indicated the chemo I started in June was producing overall improvement, with some cancer sites shrinking and most at least remaining stable.  We’ve been very grateful for that, since the chemo has been reasonably tolerable, allowing me to put in 32-40 hour work weeks.  (Have I mentioned how grateful I am for my job and the support of my co-workers?)  However, more recent scans have shown a resurgence of cancer growth, particularly in the liver and lumbar spine.  We’ve continued with the current chemo for lack of other available options, but we know that change is on the horizon.

Some of you veteran Nate Update readers might remember how I’ve tried experimental peptide injections in the past.  Since then, they’ve developed New and Improved “flavors,” with one variety just for Hodgkin’s, so we gave it another shot despite being non-FDA approved & non-insurance covered (thanks Mom & Dad for the $$ assist!).  We ran into a hitch, though.

I’ve been on prednisone for the last few years to manage a lung condition (radiation pneumonitis) caused by prior radiation treatment.  Unfortunately, the peptides are rendered useless by steroids, so I was forced to temporarily stop the prednisone every few weeks for the injections.  That turned out to be a less-than-stellar idea, as my body would go into withdrawal each time, which was not pretty.  So, we’ve decided to put the peptide injections on hold for now.  I’m going to slowly taper down the prednisone pills and attempt to shift to a steroid inhaler that would target the lungs directly where it’s needed, instead of my entire body where it’s giving me a puffy “moon face” and wreaking havoc with my sleep.  We’ll see how it goes.

I promise that I was a responsible fellow and had my pneumonia vaccine (actually it was Jill who really made me do it).  Nevertheless, I apparently picked up some stubborn variety and ended up in the hospital for a few days in January.  My blood pressure was through the roof (normally really low), my oxygen levels were through the basement, and I couldn’t breathe even laying completely still.  Thankfully, they took great care of me at Southern Maine Med, as usual, and I’m back to my “normal” self after a few rounds of antibiotics.  Enough about that.

Still with me?  Almost done.

My company switched pharmacy insurance this year and they’ve done pretty well so far, picking up the tab for my ongoing medications.  But, now that it’s time to refill my supply of daily chemo pills, the insurance is not so quick to approve.  Even though trials have shown this chemo to be helpful for Hodgkin’s, it is currently only FDA-approved for kidney-related cancers (and the $12,000/month price tag probably doesn’t help).   My oncologist is writing an appeal letter, explaining that I’ve tried all the standard treatments, but we may need to start looking for something new to try.

Do you mind if I switch from a “just the facts” reporting style for a moment?

In the midst of all this, life goes on.  And it goes on well, actually.  I’m writing from a weekend away in the White Mountains, where Jill and Grace are enjoying the slopes and indoor pool, while I catch up on my reading and laptop “geek” time.  Our family recognizes just how blessed we are, despite these challenges.  We know that you all have your own troubles, too, many of them more intrusive to daily life and heavier on your minds than ours.  Please know that we do pray for you.

If you read Hebrews chapter 11, you’ll find a list of people who were given promises from God, and yet “died in faith, not having received the things promised, but having seen them and greeted them from afar.” Still, they walked with God through that tension of unfulfilled promise, trusting Him right up to the end because they “considered him faithful who had promised.”

That’s the sort of life our family aims for.  God hasn’t promised to heal me or that any of us will live forever.  That’s just not the way things work in our broken world.  But, unlike those saints of old, we have the benefit of being able to look back and see that those individual promises were eventually fulfilled and better still, to know the reality of Christ’s death and resurrection for us and the hope of heaven.  We pray that knowledge will be your strength and encouragement, too.

“Now faith is the assurance of things hoped for, the conviction of things not seen….for whoever would draw near to God must believe that he exists and that he rewards those who seek him…Therefore God is not ashamed to be called their God, for he has prepared for them a city.” (Heb 11:1, 6, 16 ESV)

The Barney Fife edition

I’ve been feeling pretty low lately – tough to even get out of bed in the morning, bone pain, not sleeping, new lumps and bumps, night sweats.  All the signs that the Hodgkins has not been responding to my latest chemo drug.

I can’t take anymore!

I was prepared for bad news at my checkup this week, but I tried to play it cool…

Nothing phases me…

So, I didn’t quite know how to respond when we got good news instead…

What do you mean, Doc?!

Good News

The scan showed no new cancer growth and some spots had diminished.  We still have a long way to go, but the chemo seems to be slowly working.  We plan to try it for another two months and then check again.

I’d like to thank the Academy

Bad News

We’re not sure why I’ve been feeling so poorly.  A few possibilities…

1) The Hodgkins.  I haven’t really mentioned this, but it is at Stave IV – above and below the diaphragm, in bones, in liver, etc.  So, this theory makes some sense.

2) The chemo.  I can live with that.  I’ll take a short break and try again.

3) The Radiation Pneumonitis (lung damage from previous radiation treatment that causes coughing and difficulty breathing).  I’ll try increasing the prednisone again and also a different drug that may help.

4) The daily box of chocolate-covered doughnuts.  Guess I should stop.

Grrrr…

I’m also going to start seeing a doctor who has alternative approaches to treating cancer, like pinching your nose (just kidding…I hope!)

Ouch!

So, thanks for listening to me pass on the latest news.  We’ll keep ya posted!

Talk to ya later!

A good spring

Hey, how’s the early summer (or late spring, technically) been treating you guys?  It’s been great for us.  The three month break from treatment after my last scan gave us a chance to have some very welcome family time.

We were able to meet up with my parents and brothers in Folly Beach, SC.  We all chipped in to rent a huge beach house right on the ocean.  The weather was great and we really enjoyed catching up with my family.

And…Jill  and I just got back from a nice B&B weekend in the White Mountains of NH.  It was actually a long overdue Christmas present I had promised her, but it coincided nicely with celebrating her birthday, too.  Can anyone say “Two birds, one stone”?  ; )

I know, I know – we’re lucky dogs ; )  We know it, too.  We’re very grateful.

You might have guessed what’s coming next, though.  I had a checkup that showed the cancer has returned.  The doctor summarized the situation as “things look like they did before your last chemotherapy regimen…and maybe a bit worse.”  We weren’t too surprised.  There is a lymph node in my armpit that conveniently serves as a cancer-onometer.  I can generally feel it get larger when the Hodgkin’s is acting up, so we had a hunch it was back.

It’s time to get my game face back on.

As you know by now, they’ve already tried every treatment trick in the book, many of them more than once.  So…we’re trying another book altogether.  I’m going to start on a drug that is normally FDA-approved for kidney cancer.  Thankfully, it only took a couple phone calls to convince my insurance company to cover it.  It’s a daily tablet I can take at home, which is much more convenient than having to take time off from work to go to the doctor’s office for a few hours to receive IV chemo treatments.

We’re not sure what to expect.  How will I feel?  Will I be able to keep working?  Will it work?  We’ve learned not to dwell on those questions.  Wait and see, right?  The one thing we’re certain of is that God has carried us this far.  We aren’t going to demand a particular outcome from Him.  He’s already been so good to us over the years of this saga – sustaining us on the inside when the outside is frail, and surprising us with unexpected blessings in ways we could never have orchestrated on our own.

Thanks, as always, for your friendships and prayers.  They mean so much to us.  And you have my permission to take that family vacation you’ve been putting off for so long  ; )

Nate, Jill and Grace

Can it be?

Yo, Adrian! A clean scan!

Good news for Team Nate!  My scan yesterday showed no active cancer!

The most recent flavor of chemo seems to have worked really well.  It hasn’t been easy to tolerate, but God sustained me through four 3-week cycles.  I actually think the white cell booster – Neulasta – was bothering me just as much as the chemo.  It’s an effective and necessary medicine that allows me to continue my chemo schedule, when a normal immune system would break down and catch bubonic plague or something.  But, it has it’s drawbacks.  Neulasta sends a signal to my bone marrow, demanding that it work overtime to produce those precious, protective white blood cells.  The old body has taken alot of abuse over the years and really starts to complain about it.  So, we’re were pretty excited to find that, strangely enough, taking Claritin with the Neulasta – per the advice of a growing number of Internet testimonials – made a big difference.  (I’ll be happy to give you the details if you or someone you know is ‘doing chemo’ and having trouble with Neulasta).

But, I digress.  The big news is the clean scan.  It’s been few years since I’ve had one of those.  As sophisticated as scans are these days, cancer can still exist undetected by any scan at the cellular level.  So, true to our past experiences, the doc suggests two more rounds of chemo to really wipe out those sneaky buggers.  While I’m not looking forward to more chemo, it helps to have an end in sight.  Then, I’ll be able to go chemo-free for three months before my next scan.  It will be nice if things will work out for me to be feeling well when my family converges on a South Carolina beach this summer.

Have you seen Nate lately?

The other interesting bit lately is my red face.  Think Bob the Tomato with a troubled complexion.  I like to call it one of the “fringe benefits” of prednisone.  Thankfully, it doesn’t feel uncomfortable, but it reminds me of that old joke…

”Does your face hurt?”

”No.”

”Well, it’s sure killing me!”

I’m trying to slowly wean off the prednisone, but haven’t been able to just yet.  Whenever I lower the dose, my breathing gets difficult due some radiation damage to my lungs.  But, I’ll gladly put up with a red face in order to breathe!  I might try a prednisone alternative in the near future.

So, hopefully I won’t be bothering you for another four months or so.  By then, we’ll all be enjoying the summer sun ; )

Nate, Jill and Grace

Stop me if you’ve heard this one…

(The following is a reported radio communication between a US naval ship and Canadian authorities off the coast of Newfoundland.)
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CA:   Please divert your course 15 degrees to the south to avoid a collision.
US:   Recommend you divert your course 15 degrees to the north to avoid a collision.
CA:   Negative. You will have to divert your course 15 degrees to the south to avoid a collision.
US:   This is the captain of a US Navy ship. I say again, divert your course.
CA:   No. I say again, you divert your course.
US:   This is the aircraft carrier USS Lincoln, the second largest ship in the United States Atlantic fleet. We are accompanied by three destroyers, three cruisers and numerous support vessels. I demand that you change your course 15 degrees north, I say again, that’s one five degrees north, or counter-measures will be undertaken to ensure the safety of this ship.

CA:   This is the lighthouse. It’s your call.
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Moral of the story?  Sometimes you just have to change your course.

Status quo

Seriously. Could YOU out stare this?...

Hey, friends.  Had a scan this week.  I faced off with the all-seeing eye of the Positron Emission Tomography machine  in a game of “Who will blink first”.

It won, of course.

I dozed quietly for a half hour while it peered into my insides, seeking any and all signs of abnormal activity.

Good thing it wasn’t looking at my brain.