Normal Is Nice

Fortunately, chemo weeks pass quickly and we get back to normal.  But I think I forget to let people know that we have many more good days than challenging ones!

So...normal news.

We've been enjoying Christmas music since early November while Erik practiced for the Reno Pops holiday concert.  I know everyone thinks the retailers start way too early with their holiday displays, but it turns out that all those wonderful-sounding holiday concerts involve a little jumping-the-gun preparations!  Kharma does a little singing of her own when the violin starts.  (She's pretty much on key.) 

The concert coincided with our first real snowfall of the season.  So we made our slippery drive to the concert hall, gingerly walked the icy sidewalks and found a full house in attendance.  Guess who got the last seat available?  The music was enjoyable from beginning to end and seeing how handsome E looked in his new tuxedo shirt and black bowtie was the perfect finishing touch.

We've managed a bit of holiday shopping, wrapping paper marathons and the obligatory standing in line at the post office.  The house was decked in red and green, snowmen, Santas, and snowflakes right from December first then decorating took a back seat to buying goodies for the grand-daughters and far-flung family.

Erik and I cut a tree right after Thanksgiving and it's been sitting outside in a bucket of water.  Well, anyway I thought it was water until I hauled it into the garage at lunch today and found it's actually been frozen in a block of very heavy ice. It's awkward to bring a Christmas tree through the doorway at the best of times, adding a frozen five-gallon bucket to the mix takes it to a whole new level.  I've settled for hammering the ice off instead of bringing it inside to decorate.  Maybe tomorrow we'll have an official place to put our wrapped presents!

Music, decorating, gift-giving...seeing old friends, Christmas parties, kids...a bit of snow, a bit of cold weather...our annual Hannukah dinner (a tradition I established once my tastebuds experienced their first latke garnished with applesauce)...holiday planning...looking forward to family time.  It's a cozy, friendly, fun time of year.

Hoping your December is proceeding normally with the usual traditions and as little stress as possible! 

Sierra at Five Months

Safely buckled up in her carseat.  Binky securely in place.  She apparently inherited her Daddy's hair--how well I remember those double cowlicks.

I could get lost in those eyes.  Sigh.  I love you, my little Rosebud!

Some Days are Better Than Other Days

Thursday and Friday? Meh.

Funny how the chemo picks up steam.  The first few days aren't bad, but then his energy disappears, his appetite wanes, and he fights off waves of nausea as the treatment's dark side emerges.

He seems content to bask in the sunshine like an old horned toad brought in from the desert.  And that's fine.  He'll rebound for a few hours and work on the computer.

Post-chemo weekends are usually pretty mellow with low expectations and that's exactly what this one is shaping up to be.  No big plans, just puttering around the house getting a few things done while the weather is still nice.

Meanwhile, Erik and I abandoned the patient, bought a tree permit, stomped around in the snow until we found a nice fir tree and tied it to the top of the SUV.  At home, after we set it in a bucket of water, we both looked at the Doug fir growing outside the window and wondered why in the heck we went out and cut a tree when there was a perfectly acceptable candidate right in our backyard.

Hmmm.

The Human Pincushion

This week involved blood work Monday morning at the lab, followed by an IV for chemo  (that took two tries).  This morning it took two nurses, three sticks and forty-five minutes to get an IV started.

Someone is thoroughly sick of needles. He knows they'll probe interminably, and may or may not be successful.  If not, he gets to undergo the torture again.    He can deal with the minimal pain of the tumors, he seems to nap while the poison drips into his veins, he's come to terms with waves of nausea and lack of energy, but just thinking about needles gets him stressed enough to send his blood pressure up a few notches.

We can't blame the nurses when we know the problem is his veins reacting to the chemo.  The poor nurses probably hate to see us walk through the door!  If we'd known at the start that veins can be damaged, we'd probably have opted for a port or picc line.  Too late now.

However, on the bright side, he felt good enough to make turkey enchiladas for dinner tonight and he's able to drink fluids without much problem.  So the side effects are manageable nowadays, thanks very much.  His blood work continues to look stellar.  And the only needle he needs to worry about is tomorrow's shot which is easy-peasy.

And hopefully he'll have to face the dreaded needles for only one more round.

Also the pomegranates from Costco have been fabulously wonderful; both John and Erik have enjoyed feasting on them.  Personally I think they're more trouble than they're worth (the fruit, not the guys).  I have the feeling that Persephone felt the same way.

Our Thanksgiving Day

I"m so happy we decided to celebrate Thanksgiving early. It meant I had all day Saturday to cook. How relaxing!  Who knew?

I'm casting my vote right now--the Thanksgiving holiday from now on needs to include Wednesday so we can all cook at our leisure and enjoy it instead of spending our Wednesday at work then entering our kitchens like rabid ferrets on a mission!

 

On the menu:

• roast turkey with gravy, 
• cranberry sauce, 
• yams and green beans, 
• deviled eggs, olives, and pickles, 
• homemade bread with decorative butter pats, 
• sparkling apple and apple-pomegranate cider, 
• pecan pie and warm-from-the-oven apple pie.  

I love the tradition of bringing out serving utensils that have been handed down through the family, using recipes from Fresno Thanksgivings, silver from our wedding, and goblets from my grandma's holiday table.  It just makes the day more special as it links us with happy memories from our past.

I had never realized until this year that my guys are Mayflower descendents.  They have the genes passed on by those brave and hardy souls who somehow survived that first year in the New World and flourished.

Let the leftovers commence!

Early Turkey Day

The turkey is thawing even as I type.  And the pantry is filled with all the necessities for a yummy dinner.

On Saturday, I'm making our traditional Finnish Orange Bread with Erik.  I think it might be his first venture into bread-making.  And I've collected all the fixin's for Mrs. Knight's Pecan Pie recipe--because it's just not Turkey Day for John without his favorite dessert.  I thought I'd start serving it for dessert that night since a little pecan pie goes a long way and I'm not sure how long his appetite will be up and running next week.  There's a limit to how long I can tolerate pie sitting around uneaten!

Erik has a soccer game on Sunday--a return match with Sonoma State.  They creamed UNR in last weekend's tournament match so we're hoping Nevada brings some defense to the table this week.  We'll just pop the turkey in the oven while we're watching soccer.  Who would think we'd still be planning our schedules around our favorite game?

The best thing about our (early) Thanksgiving this year will be that John will be feeling like eating--so very different from last November when his innards were giving him plenty of grief every time he ate, digested, or laid down.  We're not expecting him to make an appearance at the dinner table Thursday--but Erik and I will manage to dine nicely on turkey leftovers as well as fresh pies.

This was the best fruit year here EVER and I'll be making a pie from our own apples--seen here in Mother Nature's refrigerator. 

Do you love the vintage fruit-picking bucket ?  It's one of our most handy-dandy acquisitions that's  been filled with bumper crops of peaches and apples.  Because it hangs from the tree branch, the doggities can't get to it which is appreciated by the human pack.  As one of my kindergartners puts it, "fruit makes my dog toot."  Out of the mouths of babes.

Tea, Spaghetti and Burritos

John might not feel great exactly, or even close, but he's doing much better than usual. 

The spaghetti and burritos aren't unusual, but any type of liquid is a big improvement.  I don't know if he's experiencing milder side effects because it's been longer since the last chemo, the dosage has been decreased slightly or the medications are working.  Jetlag isn't making any difference one way or t'other.  He's up in the wee hours and then comes back for a morning snooze but at least he's getting some sleep.

Whatever, we'll take it. I'm hoping that maybe it will take less than a week for him to feel back to his old self.

Munich, Iceland, Greenland, Hudson Bay, Reno

The traveler is back home and I'm happy for the polar route home that avoided Hurricane Sandy.  It seems that everyone else in Serbia got a cold over the last ten days except for John (knock wood).

His midnight arrival left plenty of time for a decent night's sleep and this morning's chemo appointment.  And his usual naps in the infusion room recliner might even help alleviate the inevitable jetlag.

Today he was able to have a pastrami and cheese sandwich for his late lunch and still manage to dine on the dark meat from a rotisserie chicken with a bit of broccoli.  It's so odd that he can manage a dill pickle but not a drink of water.  We'll see what tomorrow brings.

This unanticipated trip meant that this round is four weeks after the last one (rather than the usual three weeks).  The good news is that maybe the longer wait will help him deal with the chemo side effects.  The bad news is that the next chemo will be right before Turkey Day.  We'll be having our holiday dinner the weekend before--anyone who wants to join our celebration is invited!

Postcards

Well, maybe not postcards, but definitely emails from Europe.  Yes, he managed to stick in a trip between chemo treatments.  Pretty amazing!

The flight over went smoothly and he's feeling great.  I was a bit dubious about the wisdom of this trip but it seems that his immune system is up to the challenge plus he's weeks past chemo so he's got plenty of energy and drive.  He bounces back fast.

He's showing a group of investors around the properties--being on the ground and actually seeing mineral is pretty motivating.  They've had some good results so far and we hope they continue to find mineral.  The field season is coming to an end for winter and it's time to plan for next year (and have the money to fund the exploration).

He's busy enough that I'm only getting short updates.  I know that he made it to Belgrade before his bags due to a tight connection.  I know that the group survived a wedding party in their hotel (it seems like every trip runs afoul of a noisy wedding once).  They've been touring the Serbian sites and will soon swing through Bosnia briefly.

Naturally I'm wondering what fruits they are harvesting there, if the trees are as colorful as our Sierra aspen, and how the first-timers are enjoying Serbia.

While he's been gone, winter has arrived in the Sierra:  snow on the ridges and peaks, windy days, our first killing frost, comforters on the beds and the furnace turned on for the season.  It's time to haul out the winter clothes and enjoy soups and stews for dinner.  I could have cheerfully enjoyed the gorgeous Indian summer for weeks more, but it is nice to be wearing different clothes and not be eating yet another summertime dinner.  Now that I'm not spending most of my time gardening, I've got the sewing machine humming.  Can the holiday season be approaching rapidly?

Progress!

This weekend has been pretty good for a chemo weekend.

Of course the bar has been set pretty low after the first two treatments, but it seems as though the newest medicine has kept the worst of the chemo after-effects away.  There have been waves of nausea, but he's been able to sleep nights, feels good enough to get dressed and has nibbled on the usual suspects (eggs, milk, that sort of thing).

The biggest change has been that John has the ability to drink fluids.  Finally!

(Not that he's feeling up to much other than lying quietly and waiting for time to pass.)

If one has to suffer through the nasties, it helps if they get one closer to the long-range goal.  And the R-B combination is knocking the lymphoma silly.  His CT showed a reduction from 6.5 to 3.5 cm.  Very good news indeed and real progress.

Remission was a long-shot possibility after two rounds of R-B.  Four rounds are the norm, with some folks needing six.  At least we're on the way with three behind us now.

He's also thankful that Nurse Tara was able to get the I.V.'s each day started with just one try.  His veins are showing the side effects of chemo (probably the RCVP) and becoming hard to get into.  Now we know why so many cancer patients have a semi-permanent access point!  Of course many folks are on a regimen spaced closer than John's three or four week schedule.

Other good news is that the shot to spur the bone marrow into producing more white blood cells is not only working, but also he doesn't get any side effects from it.

A business trip is still on the schedule as long as his white count is normal.  Feeling needed and grabbing a bit of Real Life is apparently important.  He might pay for it since he'll be mixing chemo and jet lag next time, but I figure he can just pretend he's still in another time zone while he's waiting out the after-effects.

Normal Again after Round Two

The worst is behind us and a couple of weeks respite lies ahead.  It was disappointing that we couldn't completely conquer the post-chemo yuckies, but at least we were able to moderate them.  That slightly better outcome was balanced by the fact that it took an extra couple days for him to bounce back.  It is what it is.

Plans are already in place to get our insurance to approve the use of another pre-med that's more expensive but supposedly more effective.   Let's hope that goes smoothly so the next round of chemo might not be quite so rocky.

The shots that stimulate the production of white blood cells continues to work really well.  Yippee!  It's wonderful to not worry about one aspect of this process.  Still, a bottle of hand-sanitizer for the Subaru is on my grocery list since I've been bad about washing my hands between kindergarten and home.  I figure the cupholder will hold it nicely and be obvious enough that I'll remember to use it!

I'm convinced chemo brain happens to spouses as well as patients.  I've noticed a tendency to forget the simplest things.  I'd tell you what they were...but I don't remember them.

I Spoke Too Soon

It's going to be a long weekend.  His chemo side-effects are defying the anti-nausea meds.  I can say that maybe, perhaps, hopefully it's not as bad as the last time?

I'm not sure if it's harder to be the one experiencing the joys and delights of chemo or the one standing helplessly by.

Most people have a harder time on RCVP--he cruised through.  Patients comment on how easy R&B is--and it's giving us fits.  Go figure.

At least we know it lasts for a finite time and Monday will be a much better day.  Over and out.

Another Round Two

Well, it's nice to be out of the doctor's office.  This three-part chemo pretty much swallowed most of this week. 

It's a little soon to tell (knock wood) but I'm hopeful this latest post-chemo med will make our weekend tolerable.  Med number one was ineffective.  Med number two was better but didn't completely help the nausea.  The third time might be the charm.  He still doesn't feel great--but he doesn't care.  You know how you struggle against tummy upsets and dread what might happen?  Well, remove the dread and you feel a whole lot better.  And you get a great nap in the bargain! 

Chemo part one went okay--just a bit stressful anticipating the possible reaction after last time.  Chemo day two found him with a mild headache and feeling feverish.  He didn't have a fever but he was definitely flushed.  He was able to eat conservatively and drink fluids as needed both days.

But we're finding that twenty-four hours after the chemo ends, he really starts to feel lousy all over and then nausea starts. And this time I was driving as slowly to his appointment as I could, avoiding bumps, curves, fast starts, and quick brakes.  I'm glad it wasn't my driving (somewhat less than smooth last time) that was at fault. I'd been feeling guilty for the past three weeks.

If you have to feel rotten, do it at the oncologist so he can write you a Rx on the spot and you can pick it up on the way home and start to feel better.  Especially going into a weekend--yeah, there's someone on-call, but it involves a lot of phone calls and extra trips.

He did rebound after about ten days last time and has felt well since.  The bloodwork shows that the shot to spur his bone marrow into overdrive so he has lots of white blood cells is working well. Let's hope that trend continues

I'm hoping he has the ability and desire to both eat and drink instead of lying down and dehydrating for the next four days.  Dehydrating is for pears and apples, not geologists. I need neither grey hairs nor more worrylines--so far I'm smiling and I hope to stay that way while I watch over him.

And anything that makes you this sick must be attacking the lymphoma too!  That would make the side effects worth the trouble.

Chemo version 2.0

It was a long weekend.  Like four days long.  Endless.

He's now seven pounds lighter than last Friday.  Partly dehydration, partly not eating.  And at the followup appointment today, they had a hard time coaxing any blood out of the turnip him.

But the good news is that he's turned the corner on the side effects since today was significantly better than yesterday--drinking and eating and energy are all good things.  And his oncologist says that each day will be a bit better than the one before.

There will be a different medication to try to avoid the side effects next time.  Depending on how he feels it might be in three weeks as planned or they might put him on a four week routine.  If the side effects continue to be harrowing, then they'll administer a lower dosage of his poisonous cocktail.  So options are there to be used.

He really disliked the heartburn and jitters of the Prednisone part of the last chemo regimen, but they were more annoying than anything else.  R&B has claws in comparison.  At least there'll be no worsening of the peripheral neuropathy though.

Dare we hope that it's working on the lymphoma as well as the rest of his innards?

R&B

R&B?  It could be Rhythm and Blues. 

Not that we're blue about anything right now.  Except for the intense blue of the summer sky.  And can I just say that a summer (relatively) free of doctors or labs or appointments was extremely nice?  Normal is good!

The clinic at Stanford was efficient, well-organized, pleasant, and reassuring.  Their directions were great and we found it with plenty of time to spare.  Check-in was a breeze.  The staff is friendly and helpful.  The doctors were thorough and reassuring.  Our Stanford doc is also a researcher and is expert at what's working, what's new, what's in the FDA-approval pipeline now, and what's going to be tomorrow.  If you have to have cancer, then you want to have an expert watching your back.

The lymphoma specialists meet and discuss the patients they'll see that day and formulate a treatment plan (if the exam shows nothing unexpected).  So since the RCVP didn't work on the type of NHL as hoped, they had a new recommendation for us--R-B.  It's the abbreviation of the next kind of chemo---Rituxan and Bendamustine.  It's supposed to be extremely effective and has very low side-effects.  Sign us up!  (Easy for me to say since I'm not the one having poison pumped into my system.)

We don't have to travel to Stanford for treatment since it can easily be administered here in Reno with our regular oncologist.  But Stanford is available if we have any questions or concerns. 

And the chemo starts next week.  We'll be getting used to the new protocol.  Every four weeks instead of three.  Two successive days of chemo instead of one long day.  The timing is good as the pain index is inching up a bit.

Let's hope the next CT (in two months) shows a vast improvement.  If not, then Stanford has a Plan C up their lab-coat sleeve.  It's nice to have backup for the backup but I'm hoping it's not needed.

The side benefits of our Stanford trip were getting a good visit with his family while we stayed in the Bay Area and getting to watch E play in a soccer tournament that just coincidentally happened to be in the area on the same weekend.

Westward Ho!

After finishing the last round of chemo back in May, it was time for another scan to see how much more the lymphoma had shrunk and then meet with his oncologist to talk over and plan a follow-up routine. 

The scan showed a mass that might have been some dying tissue, as hoped, but also a solid mass that was probably still active lymphoma.  Phooey.

It made the oncologist uneasy that it hadn't continued to respond to the chemo so it was time for a PET scan which would show us if the remaining mass was metabolically active aka cancer.  That was in early June and on the no-news-is-good-news assumption we headed out to see that darling grandchild, but when we returned there were messages on our answering machine--we'd missed the doctor's call that it was active and he was arranging another biopsy. 

Fortunately there was enough time before J's field work to get another CT-guided needle biopsy and receive the pathology report.  Our doctor knew when J was leaving so he made sure he called the evening before with the news that the biopsy still confirmed a slow-growing lymphoma and showed no change to a more aggressive form.  But he wanted to refer J to a specialist at either Stanford or UCSF.  He felt since the indolent lymphoma wasn't responding to the treatment as it theoretically should have, that a specialist was the obvious next step.

Even though we knew beforehand that J still was having a bit of pain, that the mass was probably active, and were thinking that consulting a specialist was probably a smart thing to do...it is still a kick in the pants to hear your oncologist confirm all that and face a new unknown.  It felt like starting all over again.

We didn't know whether it would be Stanford or SF.  Or what doctor he'd see.  Or when.  Or what they'd find.

And added to that was a scheduled three weeks in the field and the uncertainty of when he'd need to come back.  Fortunately, he's working for a very understanding group who would (continue) to work around J's medical appointments. 

It was a relief to hear back quickly this week from Stanford and begin to make plans.  Talking with a very knowledgeable and helpful contact person has yielded a scheduled appointment on August 9th with a specialist in follicular lymphoma.  It's not a surprise that the initial appointment is a month away (been there done that) and as long as J continues to feel fine, I'm comfortable with the schedule.  Stanford already has the records and is sending for his pathology slides.  I'm confirming what has and hasn't been sent with our local oncologist so there are no surprises or slip up.

I'm relaying the info to J via email.  It's too bad that his time zone is seven hours different, but what would we do without the computer to communicate?!  I'm hoping that having some solid plans relieves his mind and allows him to concentrate on his field work. 

July will be our first doctor-free month since October.  August will see us starting another round of clinics and tests.  Keep your fingers crossed!

Baby Album

Photos from our trip to visit with the newest grand-daughter.

Her nursery.

 

Hot pink everywhere!

Three generations.

 

She obviously gets her beautiful dark hair from Mom's side!  We're wondering what color her eyes will be.  I'm thinking brown, but some of her cousins have blue eyes so we'll see.

The best big sister in the whole wide world.

 

And an official teenager now.

Somebody's almost ready to smile.

 

I've only been away for two days and I already miss holding her.

Napping contentedly in Grandad's arms.

 

Mom and Dad and Baby.  And Wilson, the volleyball.

 

None of us ever tired of looking at her.  Didn't matter whether she was awake or asleep.

Catching some shuteye on Dad's lap.

 

Good thing that there's a webcam on order for her long-distance grandparents.

Ten Little Fingers

The newest family member made her debut yesterday evening.

 

We're smitten. 

The Curve Ball

Just when we thought we had the whole chemo thing down...someone throws a curve ball. 

We weren't expecting anything different from the previous five times, but apparently the stuff builds up and packs a wallop at the end.  Maybe.  That's our thought. 

Actually, it's my thought--because he isn't thinking about anything but how to drag himself from upstairs to downstairs, or how he isn't hungry but should be eating something, or how generally not-good he feels.

He did decide to go to E's soccer game on Sunday (I got two lovely goals from my son).  He even had enough energy to hit PetSmart to replace Grammy's deceased favorite white goldfish with three new white babies, figuring that at least one of them should survive.  And was able to enjoy the rotisserie chicken for our Mom's Day dinner.

But his brief burst of wellness is over and today he's back to feeling not great.

Two someones will be glad when the side effects wear off and life can get back to business-as-usual.

In the Homestretch

Treatment number six is tomorrow and I'm not sure whether it's taken forever to arrive or if the time flew by.  Regardless, it's good to know that we've reached the end of this chemo cycle.

We're saying farewell to the vincristine part of the cocktail.  The neuropathy reappeared again after the last chemo and there's no point in courting a permanent condition with just this last treatment to go.  He's grateful that his fingers have just the merest hint of a tingle.  His toes are another story but, so far, they slowly improve each time.  Hopefully, they'll continue to progress back to normal.

Besides tomorrow's chemo, we're booked with appointments for the next month.  There will another CT scan to see how far the tumors have shrunk.  Then we'll have a follow up with our oncologist, both to learn the results and to decide what comes next. 

There is a maintenance program that involves periodic infusions of the Rituxan, the monoclonal antibody that targets lymphoma, for two years.  It's part of his current regimen and he tolerates it well. Naturally we're researching the statistics and results, weighing the benefits and drawbacks, and comparing the outcomes.  While it would be nice to think that after four and a half months of chemotherapy that the lymphoma is gone (complete remission would be nice), the truth is that it'll be back someday.  The maintenance program is a new approach that helps some, but not all, patients by delaying a recurrence.

I suspect that by the time we have the CT results, talk to Dr. Bowman and give it a little thought, we'll be able to come to a decision we're comfortable with.

Now it's time to pack the cooler for tomorrow's indoor picnic, grab a good book and a bag of hand-sewing and get ready for tomorrow.

We're grateful for a capable doctor, caring nurses, supportive family and friends.  And warm weather. 

Shrinking

Good news from the latest CT scan--the biggest tumor went from 4 cm to 2 cm and the oncologist feels that it will be completely gone after the last chemo treatment. 

CT scans are wondrous things but the radiologist makes or breaks the quality of the results.  Like the original radiologist that characterized the mass as "extensive"--kind of like saying that Nevada is a "large" state.  Our oncologist ended up sitting beside a radiologist and looking at the scan to see exactly what he was treating.  It's not like we rejoiced knowing that the lymphoma was 4 by 8 cm or about the size of two golf balls but it was a whole lot better to know what "extensive" meant.

And don't get us started about the shock of learning that there were other small tumors that the earlier radiology reports didn't mention.  Happily, those lymph nodes look completely normal now.  You would have thought that a previous radiologist might have noted them though.  We're just happy that whoever did the latest comparison was competent and thorough.


The last chemo had some new side effects that we were hoping to avoid--a bit of peripheral neuropathy, or tingling, first in his feet and later in his fingers.  It was mild and pretty much disappeared over the intervening weeks but we'll be watching out for it after this round.  We did add some vitamin B-6 tablets to the dinner menu in hope of preserving those nerve endings.  And if the neuropathy appears again, the last chemo might be RCP instead of RCVP to eliminate the nerve-destroying culprit.  Good thing we're close to the end so that the vincristine won't have many more chances to cause problems.

So...two more chemo sessions to go and the oncologist is very happy about the results to date.  We're keeping our fingers crossed that it continues to go smoothly and that the lymphoma continues to shrink into microscopic insignificance.  It'll still be there, growing every so slowly, but hopefully causing no symptoms for a looooong time to come.

Two-thirds Through

We show up at the usual time in the usual place.  He gets the usual pre-meds, they hang the first bag, he gets the sleepies and takes a nap, we open the cooler and have lunch when he wakes up, the afternoon passes with work on a laptop or a novel, the pump beeps that he's finished and we head home.  Just a routine visit to the Infusion Center. We're two-thirds of the way through now.

We're actively trying to mitigate the side effects this time rather than just saying that they're minor and waiting them out.  If Benadryl can put him to sleep in the hospital, maybe it will also work at home to counteract the dreaded Prednisone jitters.  And if the Prednisone is causing heartburn as it goes down, then perhaps coating it with chocolate will keep it whole and innocuous until the pill is safely in the tummy.  At least I haven't heard a hiccup yet tonight because that's one I have no cure for.  Like I said, pretty minor problems.

Welcome to our new normal.  Doctor visits, blood work, CT scans, wonder drugs.  Also good appetite, plenty of energy, decent nights' sleep.  Not quite completely asymptomatic since there are twinges now and again--but so much better than the end of last year that it feels like a one-eighty.

Fingers crossed for continued good results!

Round Three

It's becoming routine.  We know what to expect by now during the chemo cocktail.  The nurses are a very nice group.  They make us feel welcome and cared for.  J. has good veins so getting an IV started is never a problem.

The Benadryl pre-meds make him sleepy enough to nap for a couple hours during the morning as the Rituxan drips drips drips ever so slowly.  Then we open the cooler for lunchtime--salami and cheese, fresh sourdough, dried fruit, lemonade, nuts.  J. opens his laptop and works while I continue to sew or embroider.  My Kindle is always at hand with a variety of literature--heroines from Lisbeth Salander to Anne Shirley.  The afternoon sun pours through the windows in our lttle cozy nook.  This round took 6 hours from start to finish compared to 9 hours the first time.  I think that's as fast as it will ever be though.

The side effects are very manageable, still.  The bit of nausea is well controlled and I fix comfort foods (plain meats and cheesy pasta) for dinner as they seem to be the most appetizing.  Round two and three have also included hiccups and heartburn for a couple days.  He seems to be drowning the heartburn successfully with milk and ice cream and the hiccups are intermittent and minor.  I know that early next week his appetite will rebound fully and more interesting foods will appear on the menu.  The Prednisone insomnia just means that he sometimes works at 4 a.m. and naps after lunchtime.  It's not pleasant, but it's only for five days.  Maybe it will just fit in with our return to Daylight Savings Time this week?

We're grateful that neuropathy has not reared its ugly head (knock wood).   I have a printout of vitamin B-rich foods on the fridge (they promote healthy nerves) and have made sure they make a frequent appearance on the table.  Do they make a difference?  Don't know, but we love asparagus and sardines, etc and they can't hurt!  And if those B vitamins help him avoid what could potentially be a permanent side effect, I'm for them.  I know how miserable I was with carpal tunnel and I can't imagine having permanent neuropathy.

His pre-chemo checkup showed lower white cell counts again.  His oncologist says that his count lowers slower than most and is actually on the way back up before chemo--which is pretty much what we figured since the CBC shows normal levels the week after his treatment.  J.'s still keeping out of the public arena all the time (I figure the kindergarten germs I bring home are more than enough for him to combat) but that Week Two timeframe when his counts are lowest make us take extra precautions.  Just in case. We'll count on normal white blood cells rebounding by his post-chemo checkup this Wednesday.

On His Own Schedule

From a white count that was definitely on the low side just a week ago, to a perfectly normal count today! Apparently J's on his own recovery schedule. Hey, as long as that white count continues to rebound, we're good.

I admit it was a relief to learn it was back in acceptable territory, especially since we'd been extremely careful about keeping him away from crowds, washing hands frequently, and avoiding raw fruits and veggies. I think he'll be most thrilled to have free access to fruits again!

Most patients have a low count about now, a week after chemo, and it slowly climbs back to normal right before the chemo drugs attack the cancer cells again. It'll be interesting to see what the count is in two weeks when he sees the oncologist for his pre-chemo checkup. I'm betting it'll be low again.

His doc is happy with J's progress--all signs are good. J's happy to say goodbye to Prednisone and hello to a good night's sleep. A bit of pain, minor but noticeable, has appeared but our oncologist is confident that each round will lessen it, bit by bit.

 Life isn't back to normal, but we're happy with the current state of things!

Round Two

Today's chemo session went faster than the first.   Since J tolerated the first round so well they were able to speed up his IVs--we were only there for seven hours instead of nine!


We're able to report that the drugs are working well.  Compared to three weeks ago, pre-chemo, he's now sleeping, has an appetite, and isn't taking anything for pain.  He feels so well, in fact, that we were a little surprised to learn at his pre-chemo checkup that his white count is pretty low.  So we're washing hands religiously and being extra careful with food prep as his immune system isn't up to coping with any infections.


With a low white count, it's possible that he may experience more side effects this go-round.  Only time will tell if he gets extra fatigued, but it may be a long seven days.


His regular oncologist was out-of-town so we had our appointment with his colleague--who just happens to be a kindergarten daddy from last year--he took extra good care of us and made sure the white count was high enough that chemo was okay.  As he said, lymphoma treatment is more like running a marathon than winning a sprint.  We are blessed to have the care of a wonderful group of oncologists.


What do you do when you're tethered to one place for an entire day?  Well, like we found the first time it helps to be an early appointment so you have your choice of spots to hang out.  First we choose a deep bay with sun-drenched windows that's slightly separated from the rest of the room.  Then J. catnaps in his recliner since his pre-meds make him sleepy.  Or he solves word puzzles.  Or he takes out his laptop and works on his latest consulting project.  I'm in charge of bringing a cooler filled with drinks, fruit, jerky, nuts, crackers and other munchies that become lunch, snack and boredom killers.  I raid my workbasket beforehand to keep my hands busy with embroidery, quilting or applique.  My trusty Kindle provides endless reading material and there's always naps in the sunshine.  E works right around the corner and he drops in before he starts his shift.  Sounds familiar, right?  Only two times and we're already developing a predictable routine.


Keep your fingers crossed that the side effects are as bearable as last time.

First Follow-up

Blood count is good.  No huge side effects.  All systems are go. 

So nice to have so little to write about!

So Far, So Good

The only side effects so far have been a couple days of nausea which resulted in a temporary disinterest in food which he's since made up for. 

Also, J. didn't need any pain pills from Thursday morning until Saturday afternoon!

He's had the energy to work and enough of an appetite for some business dinners with co-workers currently visiting the States.

Knock wood that it continues like this!

Round One

J. survived his first treatment today with flying colors!  As our oncologist predicted, boredom was the primary side effect.  The "worst" reaction was Benadryl giving him restless legs and sleepiness, lol. Works for us!

We loaded up with a lunch and enough snacks and drinks to last through the day.  Good thing too, since we were there from 8 a.m. to 5 p.m. We spent the day sitting in a nice little alcove separate from the main room.  (It pays to be the first patient of the day so you can lay claim to the prime location and you can bet that we scheduled the next appointment nice and early too.)

I kept track of each drug as it was hung and noted how fast each was being delivered through the IV.  The staff was cautious about each one since the medications are pretty heavy duty stuff with loads of possible side effects, especially the first time out.  I have to say that Laura, Tara, Karen and Sonya took good care of us all day long. 

We managed to complete two crossword puzzles, read our books, watch the construction zone below and occasionally doze off.  Son #2 even dropped by for a short visit on his way to work right around the corner which was a nice break in an otherwise uneventful day.

 We're home and the dogs were delighted to see us after being left alone for the whole day.  We're now following the recommendations to minimize any possible side effects for the next few days.  The bigger side effects usually show up after a week, but we're hoping that J. continues to sail through as nicely and trouble-free as he did today.  You can bet I'm watching him like a hawk to make sure he's following orders for meds, water, mouth rinse, meals.  


Now it's my turn to run a hot bath and enjoy a moment of relaxation just for me.  Which is made easier by the fact that he hasn't had anything for pain since 9 a.m. and is still feeling well.  Yippee!


Thanks for all your nice emails.  Keep us in your thoughts!


Hugs from both of us


 

Welcome to DoctorLand

Some background:  J. wasn't feeling well as long ago as August and then really began having issues with his digestive system in October.  

Naturally, as much as he's been traveling, at first he chalked it up to jetlag or the eastern European fiber-poor diet.  Eventually he thought it might be due to diverticulitis and started a clear liquid diet (the jello and bouillion kind that any hospital patient is regrettably familiar with) while he waited for his appointment with a gastroenterologist to finally roll around.  That brings us to the end of November.

The Physical Assistant he saw ordered a CT scan which showed extensive adenopathy (enlargement of the lymph nodes).  Combined with the digestive pain, he first suspected colon cancer which had begun to spread.  Not good at all.

So J. had a colonoscopy which came back clean, thankfully, at which point the P.A. suspected lymphoma. 

Next up was a CT-assisted needle biopsy right before Christmas.  The pathology report came back showing non-Hodgkins lymphoma.  Follicular small cell B, an indolent slow-growing lymphoma, to be more precise.  

(Did you know that now they tell you that you have cancer over the phone?  I guess that means cancer isn't the death sentence it once was.) 

At that point we were referred to the oncologist and sat back to wait what seemed like forever and a day for the initial appointment.  It seemed like a long time because J. went from discomfort to pain, from no medication at all to needing full strength Tylenol, from a good night's sleep to restless, interrupted nights.

We saw the oncologist, whom we like, in mid-January.  Dr. Bowman wondered if the increasing pain meant that J. had a more aggressive form of lymphoma than the biopsy indicated.  So it took more time for him to find out from the radiologist exactly how big a tumor "extensive" meant and decide if another biopsy was needed to get a wider same of the cells.

(Sheesh, I expect a fourth-grader to be vague in a report, but not a doctor.  And when we found out that "extensive" meant four by eight centimeters, or about the size of two golf balls, I wasn't happy at all that he hadn't been more specific.  Grrrr.)  


Given the size of the tumor, the oncologist contacted a surgeon to perform another biopsy.  We were eventually scheduled for a consult in early February.  Meanwhile J. had to have a CT scan of his upper abdomen to ascertain if any other lymph nodes were involved.


Long story short, the surgeon wasn't comfortable with the retro-peritoneal site that the biopsy would need to reach and the CT scan showed no change in tumor size over the five weeks between the first and last scans.  So J. and the oncologist decided that the original biopsy was more than likely right (the fact that the pain responded better to anti-inflammatories rather than codeine seems to fit the slow-growing model too--just another piece of the puzzle) and to start chemotherapy as originally planned.  


That brings us up to tomorrow Thursday the 26th--chemo round one!  

It's a multi-pronged attack involving four drugs in combination. The current plan is for six treatments, one every three weeks.  Reading about these nasty but effective chemicals is a little scary and we're hoping the oncologist is right that the side effects will be minimal.  Realistically, we know that a major upheaval is about to hit us.


That's it for now.  Time to put together a backpack filled with food, drink, books, magazines (and crafts for me) to take to the infusion center tomorrow.  What a way to take a day off work!

Welcome to The Diagnosis

The short version:

J. has non-Hodgkins lymphoma.  It's a slow-growing cancer of the lymph nodes.  It's not curable in that it can't be nuked into submission with radiation or removed by a surgeon. Our oncologist explained it as a fluid tumor--so it's impossible to operate and remove every single watery molecule and pronounce him cured.

It's slow growing instead of aggressive and so is considered more of a chronic condition that will need treating as symptoms appear.  J. has been having pain, that's a symptom, that's why chemo is starting.  

The good news is that the chemo can make a big difference very, very quickly.  We'll be keeping our fingers crossed.


Good thoughts, positive energy, sincere prayers and burnt offerings all accepted with gratitude!

 

It's a Girl!

There are a lot of wonderful "firsts" in life, but learning that you're going to be grandparents has to be one of the best! Here's her first ultrasound:

Originally Pierre and Deni wanted to be surprised when the baby arrives in mid-June, but then discovered that all the cutest nursery outfits were for those who knew whether they were having a boy or a girl. I had a feeling that Miss D would cave when shopping entered the picture!

So I'm gearing up for pink, ruffles and lace.  As in lace-bottomed onesies.  Pink quilts.  And little white baby sox with ruffled edges.

I'm not used to girly stuff, so this is a treat!  Now the important question--what grandma name do I want to go by?