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?

It's That Time Again

Mid-October.

The aspen are golden in the mountains. Mornings are crisp. Days are shorter. Colors are richer.

And my favorite girls are a year older wiser and more delightful.  Happy Birthday to the October contingent!

Birthday Girl

It's someone's birthday.

She's related to me. She can't sleep when someone else keeps the light on and reads. She talks in her sleep. 

(I made sure her future husband knew all these things before they got married.)

She's also friendly, funny, nice singing voice, fairly intelligent, decent cook.  

I'm pretty lucky to have her for a sister. 

Happy birthday, Pooh!

Nothing Cuter Than a Baby Chick

or four.

After ten days they no longer fit in the bunny basket. Just look at those long legs!
We named our four Buff Orpingtons, who will grow up to be buxom beauties, Sophia Loren, Carole Lombard, Rita Hayworth and Marilyn Monroe.

I know I'm not the only cousin who's begun raising backyard chickens--who else has named their girls?

Spring Roundup

Just a few photos to show what's been happening around here.

First, we finally put up Grammy's shelves from Christmas (only took two and a half months). Still needs tweaking, but it sure fills up the wall nicely.  And so easy to prop up Gram's collection of original watercolors (courtesy of my MIL).

Then there was the paver issue at her house. The builder fixed it out of the kindness of their hearts even though they said it wasn't their fault. Yes, it's true...we previously hired a gopher to come excavate just so we could produce a sinkhole so Lennar'd have to fix it. Gram said it was an interesting feeling to slowly sink down when she was wheeling out her trashcan.



This sofa may look familiar to someone in the family. 

I discovered this clone at Goodwill. How much?

What a bargain, eh? (Yeah, watched too much Olympics and picked up a Canadian accent.)

Spring is slowly arriving here in Reno.  My favorites are the striped crocus. Take thirty shots and one is bound to be acceptable.


I fell in love with this French apron hook.  I'm slowly gathering supplies to build my own. How hard could it be? I need one because...

I keep making aprons and I have no place to hang them in our kitchen. My shirts are enjoying freedom from grease and tomato sauce stains.


Lastly, my sweet sister-in-law's father passed on to join his wife in heaven this last weekend.  It doesn't seem all that long ago that we were all together in Paso for our nephew's graduation...

Grammy and I both thought we heard J's mom laughing with delight when he got there.  We miss both of them.