Come On!!!!!

John's urology appoint was, indeed, a "howdy-doody-just-checking" follow up.  All's good in that department.  However....
His nausea is still an issue.  We've spoken with Dr. Low's office (surgeon) who reiterated that John must eat smaller amounts MORE OFTEN -- like six times a day.  And keep fluids going.  All common sense and John said he would make an effort in that department.  It's important to remember that that he doesn't have a stomach anymore; just a tube.  And that tube needs to maintain its shape and not stretch.  The mechanics of a normal stomach are that it has a natural "muscular" contraction that not only stirs around digestive juices with what you eat, it pushes food into the intestines for absorption into the body.  John's system relies on gravity only.  If food sits in a "stretched out" stomach too long, it will lead to acid indigestion and heartburn...which started this whole cancer thing to begin with.  So, no more than one cup of food in at a time.  Picture eating an egg salad sandwich like this:  First you eat one slice of the bread from the sandwich.  An hour and a half later, you eat the egg filling.  Wait another hour and a half and eat the other piece of bread.  There.  You've taken three hours to eat a simple egg salad sandwich.  Whoopee!  Wasn't that yummy?
Yesterday was a good day.  But today is a downer for John as the nausea came on just after he ate his breakfast scone.  Understandably he's discouraged.  I mean, how do you make yourself eat when you feel like what you're going to eat is just going to come right back up?  And he never feels "hungry."
I'm pissed off about the whole thing.  First of all, I want my husband to just feel good all day for more than a day here and a day there.  I'd trade going back to having monthly menstrual cramps (and they were doozies!) if it meant that John could feel more like his "old self.
The second thing that I'm pissed about is that we had to go get John some new pants yesterday.  His one-month-old pants would be a perfect costume for him to wear to a try-out for Ringling Brothers Circus.  He's now a studly 36/32 in jeans.  Eat your heart out, Mathew McConaughey!  (We just need to KEEP John this size.)  I, on the other hand, still resemble Mrs. Michelin Tire Man.  If someone could invent an "organ donor" program for fat, I'll be the first to sign up!
There.  I feel somewhat better.  Thanks for listening.  Like Rosanne Rosanna Danna ('70's "Saturday Night Live") used to say, "If it's not one thing, it's another..."  And the other thing is that your support is keeping ME going...Merry Christmas, peace and joy to us all...Nancy

Christmas Wouldn't Be Christmas Without at Least 1 Doctor's Appointment

Merry Christmas!  We've made it this far and are looking forward to the holiday -- We have much to celebrate; namely John's gradual recovery progress and YOU. You, our friends, family and John's co-workers, are our real Christmas blessings!
John has a follow-up appointment with his urologist, Dr. Pettit, this coming Tuesday. Hopefully it will be just that:  a "follow-up-howdy-doody-just-checking-to-see-how-things-are-going" appointment.  And so far, things seem to be coming out A-OK in John's urology department (no pun intended).  I guess it just wouldn't be the holidays without SOME kind of visit to see a doctor.  It's like a gift that keeps on giving.
As we near the end of this year, our "annus horribilus" as Queen Elizabeth once called one of her family's year of chaos, I want to send you all wishes for a Christmas of love, peace and health.  And may next year be a year of "annus joyous" for us all, especially Sean and Julie in Vancouver, BC who have been through this same challenge of esophageal cancer this year. Our love and prayers are right back at you!
Our journey continues as John moves on to regular scans and checks.  But you are all coming with us, in our hearts and prayers.  Thank you for your positive words, emails, cards, thoughts and love...Your presence has truly made all the difference...Nancy

Early Scope Procedure

John was supposed to have his urology scope on December 7.  But at the last minute (Monday) it was moved to today.  That being said, everything "looks" fine.  Other than some mild ureter swelling -- why Dr. Pettit doesn't know -- there is no sign of cancer.  Whew!  We can take a breath.  The doctor removed the stent that had been placed a few weeks ago when John had experienced pain caused by the narrowing of the ureter.
Where do we go from here?  Well, we had planned to stay at a friend-of-a-friend's Whidbey Island cottage the first part of December.  But John's original "scope schedule" put the kibosh on that.  So we're just going to stay close to home...See the oncologist, Dr. Nestor, next week for a follow-up and -- hopefully -- enjoy the HECK out of Christmas!  Then we'll wait around for scans, more appointments, etc.
This posting seems so anti-climactic.  When one first gets a cancer diagnosis, the world is instantly turned upside down and you jump on the cancer treadmill and GO!  When treatment is over and you enter the world of monitoring, waiting for the words "you're in remission," it's like someone pulled the plug on the treadmill and everyone disappears.  John and I look at each other as if to say, "Holy crap!  What was all that about?!?!?"  But now...we wait...and continue to pray and hope...and especially thank God for all of you.  We'll be around.  I'll keep you posted on any developments -- especially the good ones.
Merry Christmas, Happy Hanukah...and always our love and thanks...Nancy

Thankful

Don't have much to report as John doesn't have any appointments until next Tuesday, Nov. 29, when he sees his urologist, Dr. Pettit, for his "pre-op" consult.
I just wanted to wish you all a Happy Thanksgiving.  John and I will be giving thanks for all of our blessings this year.  Namely our gratitude and true appreciation for having you in our lives.  You will all be at our table, in loving spirit, this Thursday...Nancy

VM Final Follow-Up...Until Spring

The last two days have seen more doctor's appointments; some to follow-up and one to continue a process.  The continuing process is with Dr. Pettit, John's urologist.  Dr. Pettit will be doing a scope procedure December 7 to remove the stent from John's right ureter that was put in about three weeks ago to alleviate a stricture and he'll take a closer look at "things."  Hopefully Dr. Pettit will find nothing and conclude that the ureter stricture was a complication of chemo.
John also had labs drawn on Tuesday.  His counts are all moving in the right direction with the exception of a slight decline in his red cell count.  Nobody seemed concerned, but I'll see if I can't sneak some liver into John's diet for good measure.  (Yeah, I know...good luck with that!)
Yesterday we went to Seattle to see Dr. Low, John's surgeon.  He was very pleased with John progress, delighted to hear that John's able eat a varied diet and -- best of all -- removed John's feeding tube.  I watched the removal which was pretty "gutsy" for me.  Get it?  "Gutsy?"  It was no big deal, but John said he could feel the longer-than-we-thought-possible tube snaking through his body as it came out.  (Sorry if you're reading this as you're having breakfast.)
Dr. Low will be following up with an endoscopy in a few months which will actually be performed by his G.I. doctor here in Bellingham, Dr. Stiner.  Dr. Low will himself want to see John in May and will want a EGD done.  An EGD is similar to an endoscopy but gives more complete information that involves the duodenum.  EGD is short for "Esophagogastroduodenoscopy."  In non-medical terms that means "Supercalifragilisticexpialidocious."  You can look up "EGD" on Wikipedia.
In summary, we're on cancer maintenance.  As is Rachel Dedrickson, the daughter of dear friends Amy and Kevin Dedrickson.  Amy and I go all the way back to junior-high (middle-school for you post-baby-boomers) but didn't really get to be good friends until college.  Amy, who also majored in Advertising/Communications at Wazzu, interned at the ad agency that was my first post-college job.  The rest is history.  Anyway, I was talking to Amy this week and was told that her daughter, 25-year-old Rachel, had been diagnosed and treated for thyroid cancer earlier this year.  With all John and I have been going through, she decided not to share their cancer "journey" with us until now.
Rachel, you -- along with John and all cancer survivors -- are real heroes.  You inspire, you bring out the very best in people, and you bring us all together.  You are held in my thoughts and prayers.  And via this blog, you have a host of people...some you've never met and probably will never meet...who will hold you there, too.
To all of you, life's a journey and a challenge.  And the best way to take that journey is together...Thanks for joining us...Nancy

Getting Over Chemo

Not much to report (thank God!!!) this week.  On Tuesday, Nov. 1, we went in for labs to make sure John's counts are going in the right direction -- which is up.  They are, slowly, but this coming Tuesday's results will hopefully show a bigger upswing.  He's still battling nausea, although not as frequently or as severe.  Mostly after he eats; and then not consistently.  So we are taking this as a sign that chemo side effects are waning.
John's appointment with his urologist (Dr. Pettit) has been moved up to Nov. 8.  There will be some testing done to determine what caused the ureter narrowing.
So on we go.  January and our trip to Maui can't get here soon enough!  As always, thank you for your enduring friendship, prayers and support...You've made our world a much better place...Nancy

Milestone

At this morning's appointment, John's oncologist (Dr. Nestor) talked with us and said, "Well, how about we declare you done with chemo."  What relief!  They've bombarded John with everything they had and now we'll hope and pray that it was enough.  From this point, John will be going back to Virginia Mason for a follow-up endoscopy for Dr. Low, have regular scans to watch for any signs of tumors or growths, and -- of course -- go see his new urologist to see if there are any answers as to what caused his ureter blockage.  Dr. Nestor had looked at last week's most recent scans and said that he saw nothing to indicate cancer.  So that's very encouraging.
The weight of cancer is still there and will be for a few years.  But knowing that John doesn't have to go through another infusion is a huge relief.  All of the treatments and surgery have been physically and emotionally challenging, so say the very least.  I cannot come close to expressing the gratitude we feel not only to the team of physicians, nurses and staff who have taken care of both of us...But the immense thanks we have for the support of our friends and John's "Haggen family."  There are no words...Bless each and every one of you.  You are in our hearts forever...We continue on this journey of survivorship thanks to you...Nancy

Transfusion Day

John's doing much better today.  He is, however, receiving a blood transfusion as his platelets were low.  This process will take the better part of the day.  (As you can probably tell, I'm typing from John's room at the hospital.)  He will probably be coming home today but -- because this transfusion is SO slow -- he might not be discharged until late afternoon/early evening.
We'll be following up with Dr. Pettit (urologist) a couple of weeks after John's final chemo infusion (Nov. 1).  We'll also be following up with Dr. Low (surgeon) for removal of John's J-tube ("bag-o-meal" tube) and an endoscopy.  And so it goes...
Life in Whatcom County, Birch Bay -- So relaxing, peaceful; away from the hustle-bustle of city-life in Seattle...NOT!  I think we both are looking forward to returning to the doctor-free idylls of rural life where the biggest excitement is trying to figure out where the skunk, that makes it's olfactory presence known each morning when we go out to get the newspaper, is living.  Now THAT'S excitement.
So go give your loved ones a hug and tell them how much they mean to you.  You mean so very much to us...Thank you...Nancy

Procedure Done...Dinner Eaten

John now has a urologist, Dr. John Pettit.  Dr. Pettit performed John's stent insertion.  All went well.  He said he is fairly confident that the narrowing in the ureter was due to scarring from surgery.  But given John's cancer and treatment, they will be following up with "further testing."  So we'll be holding our breath for a while.
John did eat dinner tonight!  He has gorgonzola pasta with chicken, green beans, half a peach and a "Nanaimo bar" (of sorts).  Sounds good in writing...But it's hospital food.  And it's St. Joe's hospital food.  Think trans-Atlantic coach flight with food that's 6+ hours in a warming oven.  Get it?  But it's the first he's eaten since Monday morning's toast.
He's scheduled to come home tomorrow and we'll go from there.  Would somebody please turn the power back on so we can see that little light again?
I'm signing off to go cook myself some dinner and entertain the cats who have been sorely neglected for the past couple of days.  They are lovely to come to, even though they (especially Token) are somewhat demanding.  Who said cats are aloof?
Thank you for sticking with John and I on this seemingly endless trek.  I truly mean it...Thank you with all my heart...Nancy

Hospital Stay

Just a quick update 'cause I'm pooped.  Went to oncology this a.m. for John's picc dressing change.  Because of the pain he was experiencing yesterday -- and continuing today -- Dr. Nestor (oncologist) ordered a CT scan.  It could not be scheduled until 2:30 in the afternoon.  They pulled John's picc line as it had come out approximately 6 inches.  Since he has, supposedly, one more chemo infusion, they decided that it could be done via IV.  The picc was becoming, basically, useless and a potential problem.  So bye-bye.  They kept John's pain under control and continued administering anti-nausea meds steadily.
We went to the CT dept, located across town.  Had the scan and waited approximately 1/2 hour for a "wet read" (basically a STAT read).  I called Dr. Nestor and he said the scan showed excess water in/around John's right kidney caused by a "stricture" or "blockage" in his ureter.  There was NO SIGN OF TUMOR OR MASS which is good.  But he said to go to the ER for evaluation and possible hospital admission.
After 5+ hours in the ER and in St. Joe's "new" AAA department (Acute Admissions Area -- another name for Amazingly Slow Unbelievably Pathetic Procedural Nightmare Area), John was admitted for an overnight observation stay.  He hasn't been able to eat anything since yesterday morning's toast due to nausea.  So they're going to give him one can of "bag-o-meal" for some nutrition.  I'll go back early in the a.m. in time to meet with the urologist (YEA! yet another doctor).  The tentative plan is to put a stent in (this should make you boys reading this want to cross your legs) to open up whatever is reducing the flow of urine.
That's all I know as of 10:16 p.m.  Cats and I are headed to bed...Prayers will be said tonight...Hold good thoughts and prayers, too, please.  This can't be another "surprise" when we've come so far together...Thank you...Nancy

Something ELSE!!!!

Just when you can see a light, the power goes off.  Today is day 7 after John's last infusion and those blasted chemo drugs are doing a number.  After not needing "bag-o-meal" for a month, he's back on the 'juice.'  His nausea is very difficult to control, making it next to impossible for him to eat.  Today, he had two pieces of burnt toast and coffee for breakfast.  That's it.  And to top off the nausea, he's experiencing a new ache/pain in his lower right side.  One of the possible side effects of Cisplatin is kidney related.  I called his oncologist (Dr. Nestor).  They said to keep giving him fluids, maintain a strict regular schedule with his nausea meds, take something for pain and they'll see him in the morning...Unless the pain gets worse; in which case we'll head to the ER.
So I gave John 5 ml. of Oxycodon (left over from surgery) which has alleviated his pain, hooked him up to his dinner, and he's resting comfortably in his recliner at 7:15 p.m.  We head to the hospital early tomorrow for his picc dressing change and labs with a urine sample in hand.  Please, God, no kidney stones!  One more infusion (maybe), but it's all day-to-day...sometimes hour-by-hour.
I'm sorry to be so "bitchy" with this posting, but this totally sucks.  Your support and prayers, good thoughts and positive ju-ju are truly keeping us going.  I'll let you know what we find out tomorrow, if anything.  Thank you so much for caring...Nancy

Third Round...Second Infusion

I looked at the date of my previous posting which was September 22.  Sorry to have been so lax in getting any news out.  But that just means there hasn't been any news until today.  Today is John's second-to-last chemo infusion.  The past three weeks have been a bit of a challenge for him with regards to keeping nausea at bay.  But like the good pharmacist's son that he is, he is subscribing to the philosophy of "drugs -- they're a good thing."
As I type, we're 3-1/2 hours into this infusion session with about 2-1/2 to go.  I don't know if I explained the process for this particular "chemo recipe."  John receives a combination of cisplatin and epirubicin.  Because one of these drugs is hard on the kidneys, he has to receive a lengthy infusion of saline to flush his kidneys and get them revved up before receiving the actual chemo.  After the chemo, he has another lengthy saline flush to keep his kidneys busy.  (Right now HE busy in the "lav" flushing his personal pipes.)
He has not needed any overnight "bag-o-meal" feedings since September 13 and is maintaining his weight right around 218 which is pretty close to ideal for him.  (If I ever have to deal with this cancer crap, you won't see ANY postings about MY weight!)  His appetite is good although he doesn't ever experience "hunger."  We're still experimenting with food, i.e. what digests, what sits in his gut, etc.  Salmon, pork, steak, rice are things we've found he needs to avoid.  (Who'd think salmon would be a problem?)  But salads, pasta, dark chicken meat, ground beef, vegetables, most fruit (except for a taste aversion to bananas) all seem to be good.  Oh, and of course, wine is GREAT.  Amazingly enough, John's sense of taste hasn't been affected very much at all.
You always hear stories about the problems people face when undergoing chemotherapy.  Fortunately, John's doing better than most.  We keep hoping that he can continue avoid another hospital stay, continue to work and, well, just continue.  And that's due in no small part to all of you.  Thank you for your friendship, your love and support.  You mean the world to us both...As always, I sign off with gratitude...Nancy

Post-First-Round

This, thankfully, is just a quickie.  John had his first "new recipe" of chemo two days ago.  So far (and it's still early for the drugs to really kick in) he's had a little more nausea than before.  This could be a combination of the new chemotherapy drugs and the fact that he's still healing from radiation which ended September 2.  He is taking his anti-nausea meds which are helping.  I asked him how he liked having "morning sickness" for so long.  I think he has a new appreciation and respect for pregnant women.
So far, so good.  One down, two to go...Your thoughts and prayers are keeping us both going...Love and thanks...Nancy

New Chemo Tomorrow

It's been a couple of weeks since I've posted anything.  That's a good thing since nothing much has been going on.  We've reported to the infusion center each Tuesday morning so that John's picc line dressing could be changed and his blood levels checked.  All has been going well.  He's still be having problems with nausea, probably a result of his previous chemo and still-healing from all that radiation.  But the nausea medication is keeping things in check.  Hopefully they will continue to do so with the new "chemo recipe."
Something good to report is that John has not needed overnight tube feedings for about a week now as he's maintaining his weight by, simply, eating.  He had put on a couple of pounds so we decided to forego the "bag-o-meal" and see how things went.  So far he's keeping his weight steady.  But the feeding tube will remain in place during these next rounds of chemo as a safeguard should nausea become a complication.
I will let you know how things go tomorrow.  If the pattern remains the same as with previous chemo, John should feel "okay" until this coming weekend.  That's when his neutrophil/white cell counts plummeted in the past.
I've still got the rosary beads going daily and I thank you for doing "the same...." whatever that is for you.  The journey continues.  I am holding your hands and carrying you in my heart...Nancy

Oops! I Ate Too Much...

Last evening, a stunningly gorgeous Sunday of Labor Day weekend, we were invited to an "End of Summer" BBQ at friends Bob and Jenise Stone's home in Birch Bay Village.  "The Village" is the largest residential community in Birch Bay -- some 1300 homes -- and the Stone's gorgeous (and I mean GORGEOUS) residence is right smack dab on the beach.  Jenise has a well-deserved reputation for cuisine and last night's BBQ was no exception.  There was fresh cracked crab caught that morning and served al fresco on their patio; flank steak prepped with a dry-cure rub of curry, sugar, salt/pepper that Bob cooked to perfection; a delicious salad of assorted fresh tomatoes, most from the Stone's own garden; and a fresh bean/potato salad.  And, of course, this being a gathering of mostly "wine geeks," there was wine.  Lots of wine.  And somebody in our family (without naming names, it wasn't me) overindulged.  The Food Police (that would be me) was taking the evening off and not watching her perp (that would be John) as closely as usual.
What happens when a person who is supposed to eat about one cup of food every hour or two eats and drinks about three times that much?  I will tell you.  They have to have their wife -- who did not bring a purse hence drivers license -- drive them home before dessert is served.  They have to sit up for a couple of hours while gravity works its magic on their digestive tract.  Oh, they also kind of spit up a little if they cough or burp too hard.  Like what a baby does.  Thank goodness I didn't have to put John over my shoulder and pat his back.
So I'm sad to say that I cannot tell you about the dessert.  I'm sure if I knew what it was, I would be beyond disappointed to have missed out.  However, John is a little wiser this morning and back at work with no ill effects, other than a slight hangover.
It's good to have a chuckle over something during this whole adventure.  I hope this gives you one, too.  As always, you are all the best and I thank you for your continuing support.  Oh, and I thank the Stones for a very fun, albeit slightly abbreviated, evening...With love...Nancy

Last Day of Radiation

Yesterday was John's final day of radiation therapy.  Yippee!  It's the end of 6-1/2 weeks of Monday through Friday...a total of 33 sessions.  Now his body can start to recover, he can lose the fatigue and -- best of all -- eat something with tomatoes!  In about a week or so, that is.
I cannot say enough good things about the staff and volunteers at the Bellingham Cancer Center.  They are more than caregivers; they are cheerleaders.  They are the ones who helped us get up and face each day with a positive attitude because we looked forward to going to the Center to see THEM.  Thank you to each and every one for helping us along this difficult part of the journey.
And I have to say that am so very, VERY proud of John.  He was so disappointed (we both were) to get the post-surgical pathology report saying that cancer cells had been found outside the original area and that more treatment was recommended.  After a big sigh, he picked himself up and powered through these last several weeks of chemo and radiation.  Believe me, that was not a simple feat.  It required courage and determination that leaves me in awe.  I didn't think I could, but I love John even more for what he has accomplished, with such grace and dignity, and what he continues to do.
The light at the end of the tunnel continues to get brighter.  Now all that's left is 2-3 more rounds of chemo.  It will be a systemic "recipe" of Cisplatin and Epirubicin that targets the whole body rather than just concentrating on areas being treated with radiation.  His next treatment will be somewhere around September 19/20 and will be administered every three weeks.  Not sure how John will respond to the new regimen, but he will definitely be sporting his "Pirate/Bruce Willis" look for a few more months.  Let's just hope that he handles the new drugs as well as the ones previous.
I have said "thank you" so often that I'm afraid that it is starting to sound trite.  My thanks are not expressed lightly.  Thank you to EVERYONE who has come with us on this journey.  Thank you for staying by our side.  Thank you for caring and for being our friends.  We're almost there...sincerest thanks again...Nancy

Never a Dull Moment Part 2

Well...We ended up going to the ER this afternoon.  John's temp went up to 101 so off we went.  After 4 hours in the ER, some IV fluids, blood labs run, a chest X-ray and a visit or two with the (excuse me) very hot Dr. Allison (ER doc), John was discharged with a prescription for some oral antibiotics and orders to stay home and rest.  So no work this weekend.
We have a previously-scheduled appointment with oncologist Dr. Nestor Monday afternoon and will be able to follow up on today's activities at that time.  As of this evening, John's temp has dropped down to almost normal.  So pending any further developments, we'll be hanging out at home, sanitizing gel and antibacterial soap at the ready.
In spite of today's rather hectic events, we came home from the hospital to some kind notes in the mail -- Blum family and Jacque MacIntosh -- your inspiring words were well timed.  Thank you.  And one of John's business acquaintances -- John Ohler with Howe Sound Brewing Company in beautiful British Columbia -- had left a lovely "care package" at Haggen which I was able to pick up when I went to the pharmacy for the antibiotics.  My John must, indeed, be a pretty great guy to warrant such a kind and generous gesture.
I can't believe how lucky we are.  We have the greatest friends and family in the world.  Your love and support continues to amaze.  Gratefully...Nancy.

Never a Dull Moment

As of this morning, John has only 5 more days of radiotherapy (next Monday through Friday).  He was feeling a little achy -- the result of his bone marrow working on its own to build up neutrophils that become white blood cells -- and, unfortunately, a little more nauseated than usual.  So after this morning's radiation appointment, his medications got his "stomach" calmed down and he went to work.
Today's local temperatures are in the mid to high 70's with the forecast to hit 80; so it's definitely summer weather.  But John called needing to come home early (like noon early) due to chills and an overall "flu-like" feeling.  His temperature is running 99.7F, again probably because of having his "White Blood Cell Factory" working overtime.  But if it hits 100.5F, we'll have to go see our good friends at St. Joe's Hospital.  Never a dull moment in the Grigsby household.  I'll keep you apprised of any developments over the weekend. Hopefully there will be none.
So gather the family together this weekend; put together a picnic (don't forget the wine!); take your Frisbies, badminton sets, baseballs, etc -- and your jigsaw puzzles -- and head for the great outdoors for some good old fashioned summer fun.  We'll be with you in spirit.  And have a beer for us. Thanks for checking in and, as ALWAYS, my love and appreciation to each of you for your friends and support...Nancy

Swallow Test Averted

Just a quick posting to let you all know that John did not need a swallow test...at least for now.  The swelling in his throat, probably the cumulative result of consecutive days of radiation, went down after some taking some acetaminophen and the weekend's break from treatment.  He's now four days into this week and, so far, so good.  He is, however, avoiding pastrami for the time being and sticking mainly to soft foods.
I'd like to thank those of you who continue to send emails, blog postings, the occasional card, and lots of prayers and well wishes.  It is a real boost -- to both of us -- knowing that you're still on this journey with us.  Two more weeks of radiation before the final rounds of chemo.  I believe I see a pinpoint of light ahead...and all of you waiting for us when we get there.  As always I sign off with love and thanks...Nancy

A Little Bump in the Road

This past Friday, John started to experience food getting stuck again.  This time at an area higher than when this whole thing started.  Now before you start "freaking out" (as I seem to do ANYTIME something that disrupts progress happens) this is very normal.  Because John's receiving radiation every day, Monday through Friday, the area being treated is getting irritated and swollen.  After a weekend off and taking some  liquid "Tylenol," his swallowing is better today.  HOWEVER (isn't there always a bloody "however" somewhere in this mess?) we are going to be modifying John's diet and, once again, going to softer foods.  Foods like well-cooked pasta, soup and -- of course -- ice cream.  Yippee!!!!  Love having that stuff in the house as I have the self-control of a panther in heat when it comes to ice cream.
So there are 14 more radiation treatments to go and, once those are finished, hopefully John will recover and be able to eat a more normal diet.  We think Dr. Taylor (radiologist) and Dr. Low (surgeon) will most likely want to do a swallow study to get a clear picture on exactly what is going on and where.  Whether that will be in Seattle or Bellingham remains to be seen.
So I just thought I'd share this little tidbit of info with you and keep you apprised of the situation.  Speaking of "situation," I am ashamed to admit that I watched the season premier of "Jersey Shore: Italy."  Mike "The Situation" and Nicole "Snookie" are already getting things heated up.  I got hooked on this pathetic program this past spring while searching for the stupidest things in the world that would get my mind off of John's cancer.  Now you know my dirty little secret.
For now I bid you "Ciao!" and will, of course, let you know what's going on with John.  I hope these blogs give you a little smile once in a while.  They, along with "Jersey Shore," are great therapy for me.  As always, you have my thanks for your support, friendship and prayers...Nancy

New Photo and Latest News

I thought I should post a more recent photo; one that would be a little more current and -- should you see John anytime soon -- maybe minimize the impact of seeing him sporting his current "pirate look."  This pic was taken just before surgery in May at dinner with our friends the Scotts.  It's a shot of "Hon" (John) and "The Idiot" (Bruce, as his family lovingly calls him) having dinner at The Inn at Virginia Mason.  They make a cute couple, don't you think?  Well since this photo was taken, John's hair grew back, a little grayer and with a little bit of a curl...kind of sexy, actually.  And of course with the current rounds of chemo, it fell out again.  So he once again looks like the picture.
Yesterday was his second infusion (chemo) and he's continuing with daily radiotherapy.  His cell counts climbed back up last week after his Nupogen shot; not normal but to acceptable levels.  After yesterday's chemo, they will go down again as the chemotherapy wages it battle.  John will probably need another "bone booster" next week; we shall see.  But for today he's at work and feeling well.  The sun is shining and life is good.
And so it goes.  Believe it or not, signs of fall are in the air in our corner of the state.  I've noticed leaves showing subtle signs of turning and, this morning, the first "nip of change" in the air.  And as we slowly move into the time of year when we focus more on hearth and home than on gardening and picnics, I pray that the oncoming season will bring some calm and good health to us.  Until then, we'll enjoy the blue skies and and our flower pots in all their glory.  Keep sending those prayers and good thoughts.  You are, as always, our strength and support...Always in our hearts...Nancy

Where, Oh Where Have the White Cells Gone...

John's under "house quarantine" for a couple of days.  Today, along with radiation, was picc line dressing change.  This happens once a week at the chemo infusion center.  At the same time they check blood counts (CBC), etc.  Today's lab results showed John has no neutrophils (the things that become white blood cells)...can't find any...zippo...nada.  He received an injection of Nupogen, a drug that stimulates bone marrow to start making white blood cells stat.  ("Stat"...that's what doctor's say when they mean "Get off your ass NOW!")  A somewhat unpleasant side effect to this drug is that it makes your bones, particularly your leg bones because they're some of the largest bones in your body, ache due to the abnormal stimulation.  So ala "boy-in-the-bubble," John's under house arrest with a bottle of sanitizing gel at the ready.  Fortunately it's his weekend (Tuesday/Wednesday) and we have Comcast On-Demand.  And I've turned John into a Pogo junkie.  He's now playing Texas Hold 'Em -- not for $$$, just points -- in cyberspace.  Plus we have some new jigsaw puzzles.
Hold good thoughts that he doesn't catch a cold.  I'm dancing the White Cell Boogie -- isn't THAT a picture -- to inspire cell production.  Anything to avoid another stint in the hospital like last February.
You are in our hearts...Nancy

1.5 Weeks Down...5 Weeks 'Til Next Phase

Okay...So we're one-and-a-half weeks into the chemo/radiation thing.  We thought it would be 6 weeks of radiation.  But the folks at the Bellingham Cancer Center must REALLY like John as they've made his treatment schedule 6-1/2 weeks.  Now that 1/2 week may not seem like a long time to you.  But holy crap, it's ONLY the end of July.  We feel like we should be putting up the bloody Christmas tree by now!  I shouldn't complain, really, as -- all things considered -- we are plugging along with very few concerns.
Trying to put things delicately, John did have a bout of the "Hershey Squirts" about a week ago.  If you're looking for a hot stock tip, perhaps you might consider the manufacturer of Immodium AD.  But that condition now seems to be under control.  He still has his hair, which has come back more-salt-than-pepper with a slight curl.  If things transpire as they did during his first series of chemo infusions back in February/March, John should have the pirate look about this time next week...sans earring, of course.
He lost 6+ pounds last week.  As Dr. Taylor previously stated, radiotheraphy makes your body burn calories like it's running a marathon -- even if the marathon is taking place in your new La-Z-Boy recliner in front of your flatscreen TV.  (I think John's bout of you-know-what may have had something to do with the weight loss, too.  But can I please get some of that radiation?)  He's increasing his oral intake and still getting two cans of "bag-o-meal" overnight.  This a.m.'s breakfast was three strips of bacon, one egg scrambled (in butter, of course) and two pieces of buttered -- that's B-U-T-T-E-R-E-D -- toast.
Friend Maureen (Haggerty) Blum came up last Monday to pick up a special order of wine she placed with John for their daughter's upcoming wedding reception in early August. John's now a "rock star" wine specialist up here as the word is out that he's getting business from the big city of Seattle.  Thank you, Maureen!
And my "first wife" Pam Myers-Sloane came up for an overnight visit.  Pam and I lived together for a few years after graduating WSU before John and I "shacked up."  Although I refer to Pam as my "first wife," don't get any funny ideas...It was strictly platonic, although we had a rousingly good time as single advertising "execs" in Seattle.  I have many good memories of those years.  Anyway, Pam brought up a slew of jigsaw puzzles which are now at the Cancer Center.  They extended their thanks for the much-appreciated donation.  While she was here, John played sommelier for an at-home wine tasting.  His taste buds for wine don't seem to be affected by the chemo yet.  Pam enjoyed the wine; so much so that she had to sample the "dump bucket" blend at the end of the tasting.
Although time still seems to crawl along for us, the glorious summer weather is really helping to brighten our spirits.  And your friendship, support and prayers helps lighten our load.  You must be sending the right "vibes" as John's getting through all of this with strength and a wonderful attitude.
When I get to the point of closing each entry, I can't help but get a little overwhelmed with emotion and gratitude...I sign this as always with sincerest thanks to and for you all...Nancy

Picc, Chemo, Radiation....Deja Vu?

Seems we've been here before.  Yesterday John had his new picc line re-installed for subsequent chemo and blood tests.  Michelle, his picc nurse, did a FABULOUS job.  He said he didn't even know when she started and was amazed when she announced she was done.  I was there, in surgical mask, as a witness to the entire smooth procedure.  (I now know the difference between a vein and an artery on camera.  One "winks," the other doesn't.)
As I type this update John's in the oncology infusion department finishing up his first chemo session.  It was like Old Home Week, coming back to see familiar faces from a few months ago.  Faces you're happy to see...somewhere else -- like the grocery store.  I can't say enough, though, about the kindness and caring each staff member gives patients AND their families.
After this appointment, we head over to the cancer center for John's first radiotherapy treatment.  These will occur bright and early every morning, Monday through Friday, for the next six weeks.  Oh happy day!  I'm such a morning person...NOT.  But if, through all of this, John's cancer heads for "Remission Hills" it will all be worthwhile.
Girlfriend Shannon (my girlfriend, not John's) was up for the weekend.  Since we are enjoying a summer of non-summer-weather, we started yet another jigsaw puzzle.  Shannon is a rock star at putting them together but kindly left a few pieces for John and I to do before she had to go home.  I will try to post a photo of one of our puzzles, along with a more current picture of John, on the blog.
Speaking of pictures of John, he was featured in a full-page ad in The Bellingham Herald yesterday as the wine specialist at Haggen's Ferndale store.  Also pictured were the four other Bellingham-area specialists...but John's the best-looking one.  (Oh gosh, I hope the others aren't reading this!)
And so we continue the journey.  Thank you for coming along for the ride...Like American Express, we don't leave home without you.  As always, my gratitude to you all...Nancy

Putting Together a Plan

It's been a while since I've last touched base with you all which, I guess, is a good thing.  There's been nothing much to report as John has continued his recovery from surgery.  He went back to work full time right after the fourth of July and is happy to be back amongst his fellow oenophiles (fancy word for "wine geeks).
Last Tuesday, July 5, was our appointment with John's oncologist Dr. Nestor.  And yesterday we met with radiotherapist, Dr. Taylor.  John was "remapped" for accurate radiation targeting and a new mold was made of his body.  He has lost about 35 lbs. and his previous mold was no longer accurate.  (He's gone down a size-plus in pants.  His old jeans are looking a bit like "Bozo pants."  We did get him some new ones so he doesn't look like a walking advertisement for Depends.)  Dr. Taylor wants John to have a CT scan due to the radical change in his esophageal/stomach structure.  Since radiation is extremely precise, Dr. Taylor wants to make sure that they have the clearest picture possible so that treatment can be accurate to avoid damaging healthy tissue such as lungs, heart and -- of course -- all of his new internal "connections."  John's having his CT this afternoon.
Next Tuesday, July 19, John will have a new picc line inserted and chemo/radiation will begin the following day.  The plan -- hopefully the last "plan" in this miasma -- is for 6 weeks of chemo/radiation therapy followed by up to 9 weeks of just chemo.  Initial chemo treatment will be the same as John had prior to surgery.  Because the tumor and lymph nodes that were targeted were destroyed, doctors are using the same approach in the hopes that any remaining undetectable cancer in the chest area -- if there is any -- will respond in the same manner.  Post-radiation chemo will be a "systemic" recipe that will target John's entire body (his "system") in an attempt to nuke any unseen cancer cells that may be lurking elsewhere.
So John's personal chef-chauffeur-valet-assistant-nurse (aka wife) will be back on full-time duty.  You've heard of soccer moms?  Well I'm cancer wife.  I think after this year-long "Driving-Miss-Daisy" gig, I should push for a new car; say a sexy little convertible.  But I think that will have to wait until we win the Lotto.  Truth be told, John's good, steady progress towards beating this disease is enough Lotto for me.  And there are perks to this job.  The Bellingham Cancer Center has a beautiful new jigsaw puzzle of hydrangeas, roses and pansies waiting for me.  And we have a terrific 2000 piece Coca-Cola memorabilia puzzle from friends Mike and Kathy Wright just itching to be put together.  I will continue to keep you posted...continue to keep you with us as we walk along...and continue my prayers.  I thank you, as always, for yours...Nancy.

Quick Visit

Just a quick note to let you know what's going on with John...We saw Dr. Low at VM today, mainly as a consult about the discomfort John had been experiencing with his feeding tube.  Long story short, John needs to stay hydrated and continue easing back into a more varied diet.  Still small amounts, but he can now include toast (not fresh bread...toast), crackers, fresh fruits and vegetables, and meat.  The key is to CHEW CHEW CHEW.  And the tube will stay put through chemo/radiation to ensure adequate nutrition should John have a more difficult time this go-around with treatment due to a diminished stomach.  His physical discomfort with the tube has pretty much gone away and, hopefully, it will not flare up again.
Next step is an appointment  Tuesday with Dr. Nestor, oncologist and the following week with Dr. Taylor, radiologist.  I will let you all know when treatment starts and how John handles everything.
We finished the Montmatre Cathedral jigsaw last night, with a little help from Token who was arbitrarily pulling pieces off to assemble a puzzle of his own design on the floor.  (Brilliant cat!)  We'll disassemble it and take it to the cancer center when we see Dr. Taylor...
Wishing you all a happy 4th of July....Love and thanks as always...Nancy

Latest Update on Future Chemo

I meant to update the blog earlier this weekend.  However, I was teaching a 3-day watercolor workshop which took up all my time.  (I have to say it was nice to be doing something besides medical stuff!  I know John is looking forward to going back to his job and his Haggen "family," his customers and -- of course -- the wonderful world of wine and beer.  That will, hopefully, be this coming Thursday.)
Last Thursday we had a consult with Dr. Rosales, oncologist at Virginia Mason, about concerns we both have about John undergoing chemotherapy that includes 5FU.  Our questions were answered and we will be forging ahead with chemo in Bellingham as well as with radiation treatment.  Initial appointments are for next week and, I expect, treatments will begin shortly thereafter; around the first or second week of July.  We've been told that chemo could last as long as two months.  Radiation, we don't know.
Some good news is that John has been able to cut back on the amount of "bag-o-meal" he receives via his feed tube; down from five cans to two.  His oral intake is gradually increasing, but he continues to eat  several small "meals" a day.  A bit of a concern is the discomfort he's been experiencing internally in the area of the tube when he eats.  So we're checking with Dr. Low (surgeon) to see if perhaps the tube could come out altogether.  Always something new and exciting on this journey.  You wish you knew what to expect, when to expect it, and when all this crap will go away for good!  John's being a trooper with very little bitching, considering the situation.  I'm very proud of him and admire his perseverance.
We've been working on a jigsaw puzzle of Montmartre Cathedral in Paris.  (Isn't that something old people do?  Work on jigsaw puzzles?  I guess if the shoe fits...)  When this one is finished, we'll donate it to the Bellingham Cancer Center.  I hope you will continue to do a puzzle or two a year with your family, even if you're NOT old-folk, and pass it along to your local hospital or cancer treatment center.
Once again, I have to thank you for staying with us and following along.  Your friendship and support remain, as always, near to our hearts...Nancy

Ducks In a Row...

Things are somewhat quiet while John continues to heal from surgery 4+ weeks ago.  He's doing well, able to eat "soft" foods that are a step up from previous "custard-consistency" foods.  Tonight's dinner  was pasta bolognese.  He's still limited to one-cup measured meals and he continues to get the bulk of his nutritional requirements via overnight "bag-o-meal" tube feedings.  But that is gradually changing.
We have an appointment June 23 with Dr. Joseph Rosales, an oncologist at Virginia Mason who specializes in thoracic and urologic cancer.  We want to get a second opinion on how to best approach John's post-surgical chemotherapy.  Dr. Nestor, John's Bellingham oncologist, seems to favor a treatment plan that relies heavily on 5FU (the drug that put John in-hospital in February).  We'll see if Dr. Rosales  might have a better alternative plan.
Dr. Low (surgeon) and Dr. Taylor (radiation) are both in agreement about post-surgical radiation being a good option for John to pursue.  While John MAY be cancer-free right now, there is no way to know for sure.  Since cancer cells were found in sample lymph nodes taken during surgery, there is a fairly good chance that cancer cells still present.
After our consult with Dr. Rosales next week, we'll hopefully have adequate information to make the very best decision possible for John.  He will definitely undergo radiation treatment in Bellingham.  Chemo what/where is still up for discussion.  I will let you know.
John's hair is growing back; a little grayer than before and with a slight wave.  Kinda sexy, actually.  It will go away AGAIN with further chemo.  (Maybe it will come back blonde a la Robert Redford this time?)
Summer seems to be approaching.  I hope you will forgive me for saying that I am looking forward to  Christmas and winter, when all of this will be behind us and we can look forward once again.  This journey would be much harder if not for your friendship, support and prayers.  You are all in my prayers...Nancy

Radiation Therapy...Maybe Not So Finished

Well after last week's bummer appointment with John's oncologist talking post-surgical chemo statistics, odds, success rates...blah, blah, blah...yesterday's appointment with Dr. Taylor, John's radiologist, shed some optimistic light.  Dr. Taylor wants to consult with John's surgeon, Dr. Low at Virginia Mason, about the possibility of doing post-surgical radiation treatment.  This would coincide with post-surgical chemo treatments.
The only area treated pre-surgically with radiation was the KNOWN area where the tumor WAS.  Nothing was treated above a certain level of John's chest area, the level where Dr. Low took some additional sample lymph nodes during surgery for pathology to review.  Those nodes showed live cancer cells.
While post-surgical radiation treatment is not the norm, Dr. Taylor believes there is an excellent chance that, because John's cancer (tumor) area responded so well  (it all went away),  remaining cancer cells would respond in the same manner.  Great news, right?!?!?  However -- isn't there always a "however?" -- Dr. Taylor needs to consult with Dr. Low because he wants to avoid damaging the stomach/esophagus connection and other areas that are still healing from surgery.  Our next step is to meet tomorrow with Dr. Low and go from there.
So in addition to working on/donating those jigsaw puzzles, holding good thoughts, saying those prayers, and telepathically holding our hands, I'm asking you to cross your fingers.  Remember what they say about idle hands...Thanks for keeping yours busy for John.  As always, thank you...Nancy.

Home and Next Steps

We're resettled back home, for the most part.  Still need to hit the grocery store for some supplies to continue John's "pudding-like-consistency" oral diet as we move toward weaning him off his overnight infusion of "Bag-O-Meal."  I'll be making some homemade stocks for a basis of a variety of soup/stews that can be pureed with our handy stick blenders (of which we now own two) and coming up with some creative uses for tofu.  John needs other sources of protein besides dairy.  Silken tofu can be blended into bisques for the next 10 days or so and should fit the bill.  (I'd invite you for dinner but I'm afraid a cuisine that relies on "tofu" might not whet your appetite.)  John has lost about 10 lbs. in the past month, really good for an esophagectomy patient.  The battle for most patients is in trying to keep weight on.  As a side benefit (if there IS any benefit to this crazy, stupid disease),  I am now able to again wear shirts that I had "outgrown."
We met with John's oncologist, Dr. Nestor, early this afternoon.  John will indeed be undergoing post-surgical chemo treatment, probably beginning in about 4-5 weeks to allow time for his body to continue to heal from the surgery.  In today's consult, Dr. Nestor indicated that post-surgical chemo usually relies on the dreaded "5FU," the stuff that gave John "clown lips" and a full body rash back in February.  At any rate, here's the skinny on where things stand right now...
There is no "conclusive scientific evidence" that shows post-surgical chemo works.  However, because live cancer cells were found in lymph nodes removed from John's chest area -- away from the immediate tumor site -- standard protocol merits further chemotherapy.  While we are discouraged by the fact that no one can definitively say, "Yes, this treatment will get rid of the cancer," we are optimistic.  In John's case, his age, overall health and the fact that the tumor and immediate-lymph nodes responded well to his initial chemo/radiation therapy bodes well.  Statistically speaking, esophageal cancer patients who survive two years post-treatment stand a good chance of having beat the disease.  Right now we're in the 15% survival rate.  As time goes by, this rate increases...the same as it does for any type of cancer.
We have an appointment with John's radiation doctor, Dr. Taylor, in Bellingham on June 7; and with his surgeon, Dr. Low, on June 9.  After that, we again see John's oncologist, Dr. Nestor, the first part of July to get on board the "chemo train" once again.
This path is turning into a very long trek indeed.  I will keep this blog going, posting not only updates on John, but any thoughts or inspirations relating to his journey that come along.  In the meantime, keep those prayers and good thoughts coming; not only for John, but for all those facing cancer and other frightening, life threatening diseases.  Your care and support make a world of difference, even for people you've never met.  We are truly ALL in this together...Onward once again...Nancy

Going Home!

I'm once again taking advantage of Virginia Mason's wi-fi to post the latest on John.  Today's blood work and X-ray showed all looking great!  His white cell count is NORMAL so we can go home.  My mom has been incredibly gracious about us taking over her home...And has taken a real "shine" to our cats -- Token in particular.  They seem to have mutually developed a game of "Beat the Closet Door."  No matter where Token is in the house, the minute he hears her bedroom closet door open he zooms upstairs and tries to get in before she can shut the door.  Token is either a big fan of "The Lion, the Witch and the Wardrobe," trying to get to Narnia via the closet or he fancies himself on an exotic safari through the wilds of Mom's clothing.  At any rate, I'm sure Mom will be glad to get the pharmacy off of her kitchen counter, the cats out of her closet and dining room cabinets and get some peace, quiet and routine back into her life.
We have an appointment on Thursday with John's oncologist, Dr. Nestor, for a consult on post-surgical chemo.  Because some of the lymph nodes removed during surgery showed live cancer cells, we expect Dr. Nestor to recommend some additional treatment.  But John's overall attitude, recovery thus far and  determination give me confidence that he'll handle this next phase well.
And it's truly, TRULY, with thanks to you all and the incredibly wonderful people who have helped us thus far.  I can honestly say that if it were not for John's cancer, we would never have met some of the finest people ever.  I include John's surgeon, Dr. Low (what an honorable, knowledgeable, kind gentleman!) the nurses on VM's 16th floor, the IV team at VM, radiologists, even the parking attendants who were so kind to me during my long days at the hospital, other patients and their families...the list is endless.  And thank you to you all.  Your love, friendship, visits, care and support are so valued.  May you know how treasured you are...On to the next step, carrying you all in our hearts...Nancy

A Little Bump in the Road

We thought we'd be heading back home tomorrow. But as I write, we are at VM awaiting another follow-up swallow study and CT scan.  At this morning's post-surgery appointment, John's blood work showed slightly elevated white cell counts indicating some kind of mild infection.  He does not have a fever and the doctors are not overly concerned.  His X-ray did show some accumulation of fluid in the chest cavity where his chest tube was removed, but not enough to panic anyone.  His body should take care of absorbing or eliminating it.
But as a precaution he'll have these follow-up tests and...lucky Mom...we'll be staying until probably Tuesday.  The kitties will be thrilled for some extra "Grandma time" as they are getting a lot of cardio exercise chasing each other up and down stairs.
Keep those good thoughts and prayers coming.  Physically John is making good progress.  But I think he's a little discouraged, even though his couple of blips have been relatively mild.  He has so much support behind him.  Thank you AGAIN for your love and friendship... Still walking the path and will keep you apprised...Nancy

Delayed Update...Out of Hospital

I'm so sorry to be late in getting info out to everyone!  John was discharged from hospital this past Monday, May 23.  I haven't had access to wi-fi since.  (I did try to "pirate" one of my mother's neighbor's service but, unfortunately, those wily seniors seem to be wise to the idea of password protection!)  So we're at a local Starbucks for John's first post-hospital outing and access to the outside world.  Here's what's happened since my last posting...
John did have a bit of a relapse with a high temp of 102.  The doctors ran all kinds of tests including an EKG.  All checked out fine.  What they believe happened was that John got off regular schedule with his pain meds resulting in too much discomfort for him to do his breathing exercises.  When the last chest tube was removed on Saturday, it left a space.  Without John breathing properly, that space collapsed causing his temp to rise and his white cell count to become elevated.  Once his pain was back under control, he was able to do his walking, his breathing exercises and his temp went down.  So he was discharged on Monday and we've been with my mother ever since.
We've been on an every-three-hour regimen of pain meds, including overnight.  It's like having a new-born baby; I feel like I've done everything in that department except push!
Today is John's first day of something resembling food.  After only clear fluids for the last 6 days, he can now have "custard-consistency" foods, limited to 1 cup at a time.  His first "breakfast" was a parfait of 4 oz. plain Greek-style honey flavored yogurt and 4 oz. of Mott's cinnamon apple sauce.  He continues to be reliant on his daily infusion of "Bag-O-Meal" for nutrients which we start around 6 p.m. every night.  We initially had set up the infusion at 85 cc's/hour which would allow for about a 12-13 hour feed.  But John broke into a heavy sweat and we were advised to cut the rate back.  We did so and he was fine.  The drawback is that the infusion takes about 16 hours at the slower rate.  So we'll gradually increase the rate and see how it goes.  The goal over the next few weeks is to increase John's oral intake and decrease the infusion intake.
All in all I am happy to report that he's doing well.  I have made appointments with Drs. Taylor (radiologist) and Nestor (oncologist) for next week in Bellingham.  I don't think John will need further radiation as pathology showed the tumor was gone, but he will in all likelihood need post-surgical chemo.  Dr. Nestor will decide that after consulting with the team at Virginia Mason.  Before we leave Seattle we will be seeing Dr. Koehler, a colleague of Dr. Low's, tomorrow for John's first post-op check.  If all goes well, we'll be home sometime late Saturday.  YIPPEE!!!  (My little Jetta's going to be loaded to the gills with cats and their supplies, John and his supplies, me and my liquor...I mean, supplies.)
I figure we're about 3/4 of the way through this gig.  I'm praying that any further treatment will get rid of any residual cancer cells once and for all.  We could never have come this far without the love and support of you all.  For those who could visit, call, pray, send well wishes...you'll never know how much we appreciate and love you.  John and I will be working on some jigsaw puzzles and I'll stay in touch...Nancy

Not Going Home Today

Well there's been a bit of a glitch.  John's temp went up to 102 and he wasn't able to perform his "respirometer" exercises (breathing) as well as on Friday.  He was also complaining of pain in his right chest area (the side they went in for his surgery) not related to the incision.  So after a CT scan, X-ray, blood tests and EKG (just to rule out any heart-related problems), the doctors decided to postpone his discharge.  It seems that after the removal of his last chest tube, the void it left collapsed.  Just the space collapsed, not his lung.  And that can cause a spike in temperature.  He's had some Tylenol, took his first post-surgical shower and walked a one-lap stroll down the hall.  His temp has come down to 98.8.  Now we just need to see if he can maintain a healthy temp without the aid of medication.  If so, he may go home tomorrow.
Our Bothell neighbors, Bruce and Laura Scott and daughters, were in yesterday and brought a little gag gift for John:  A U.W. Husky #1 sponge hand, a couple of U.W. Husky bumper stickers and two University of Washington pencils.  John feels THAT is what caused his "relapse;" Bad-Dog Karma.
To be honest, I'm a bit relieved that they're keeping him for at least another day.  I wasn't too excited about getting him "home" and having to bring him back this evening to emergency just to be readmitted.  Tomorrow, after all, is another day.  I'll keep you all posted...Nancy

Busy Day

Well if all goes as well as it has been, John will indeed be discharged sometime tomorrow.  Today was "Nancy Goes to School" Day.  We've had an IV pole; two pumps; numerous tubes, bags, syringes, accessories; a pump backpack; etc. delivered to my mother's house for John's at-home "Bag-O-Meal" program.   I had to learn how to set up, prime and run the pump.  I also had to learn how to flush John's feeding tube as well as clean and dress the area.  There are a lot of nurses in my side of the family, including my mother.  I never thought I'd be one.  Oh the irony...
John's doing very well.  His final chest tube was pulled late this morning, so he's footloose and fancy free for his strolls up and down the hall.  He's a little more tired and feeling some of the aches and pains that come with surgery a little more, but on the whole...he's super.  But then I ALWAYS knew that.
We got his pathology report yesterday afternoon.  It was very good.  Not super-duper, but VERY good.  The cut lines on his esophagus were clean for cancer which is wonderful.  The doctors removed a total of 15 lymph nodes from the immediate area where the tumor was as well as from other areas of his chest.  Some of those showed cancer cells still active.  What this means is that the "Tumor Board" and Virginia Mason will review his results, as will his oncologists at St. Joe's in Bellingham.  They will make a recommendation on whether or not John will need post-surgical chemo.  I have a hunch they will make that recommendation -- which is not a bad thing.  I look at it as kind of insurance; an extra one-two punch to get rid of the disease.
For now we will be staying with my mom until probably Thursday should anyone want to visit.  I think it's a good idea to stay close to VM until we know that John can process regular food.  (Regular food the consistency of smooth pudding, that is...yum-yum.)
Writing this blog has been very cathartic for me and I've tried to keep things light and interesting.  I'll continue to keep you apprised of John's progress as he gets weaned off of his "Bag-O-Meal" regimen and back on solid food.  I'm sure there will be some humorous stories to share as we go down this particular path on our cancer journey.
To everyone who has sent email notes, comments, cards, calls, prayers...Thank you.  John and I truly have the greatest life because you are all part of it.  I'm keeping you all -- even those of you who I have not personally met yet but have sent best wishes -- in my breast pocket, close to my heart.  I'll be talking to you...Nancy

Fewer Tubes and Grape Juice

As of this morning, John is down to just one chest tube (which should come out tomorrow afternoon) and his "Bag-O-Meal" feeding tube (which will be with him for up to four months).  All is going great.  As I was typing this, Dr. Low came by with the news that John's target discharge day will be Sunday.  Wow...Only six days after surgery!  John rocks!  We'll stay at my mom's for a few days as a "just in case of emergency" access to the hospital.  And we are still awaiting the pathology report.
Yesterday was a good day with lots of visitors.  Neighbor Laura from Bothell; our niece Emory (Danielle); and long-time friend from WSU, Shannon.
We've been introduced to at-home nutrition procedures.  We will be going home with a pump and IV pole so that John can enjoy his "Bag-O-Meals" at home.  We'll be taking a class on how to use the pump, flush and clean his feeding tube, etc.  For two full days after discharge, John's diet will consist of "Bag-O-Meal" and a limited intake of clear fluids.  (No, wine does not qualify.)  Then we move to cooked/pureed foods for 7-14 days (think "infant" baby food).  No bread.  No oatmeal...Very limited fiber. After that...well, I save those menus for later.  I'm kind of going into overload with all the new instructions we're starting to get.
So it's all good news  John said to thank you all for your support.  I say thank you for all your prayers and positive thoughts...Will keep you posted on life at Virginia Mason "Spa and Hotel" and news when we get his path report back...Love to all...Nancy

Swallowing Test

This morning John went in for a swallowing test.  He had to swallow some barium, a couple of nuclear (wow!) things, some water, etc. etc. etc.  They literally turned him upside down and tracked how everything travelled via CAT scan imaging.  Dr. Low was very pleased!  So hopefully he will be able to have a few sips of water today.
In addition his catheter may come out.  They are also planning to remove his epidural line through which he is currently receiving his pain medication.  If they do so, he'll receive those meds via his feeding tube.
As I type John is out for his first real walk of the day with his student nurse (from U.W. School of Nursing...Oh my!  I hope she makes it back in one piece!).  He did five walks up and down the hall yesterday, on which three of those walks he completed three laps each.  I continue to be amazed at his attitude and determination.  I am so proud of him!
The next "hurdle" will be dependent upon the pathology results which should be in tomorrow.  Holding good thoughts for a clean result.
I will let you know about today's events tomorrow.  Love and thanks to you all....Nancy

Hospital Update...

Yesterday went as written except for a spike in John's temperature; not unusual post-surgery.  So after administering a dose of Tylenol (he can't swallow ANYTHING so use your imagination as to how he got his Tylenol) and a few laps up and down the hall, his temp went down.
This a.m. Dr. Low and entourage visited around 8:45 and all were very positive.  One of John's chest tubes was removed and as I write, he's having a sponge bath and preparing for his first walk of the day.  He still has one chest tube, catheter, nasal tube and IV for pain medication.  Cath may come out today; second chest tube perhaps tomorrow; nasal tube perhaps the day after that.
So the next few days will be the same routine (HOPEFULLY):  A minimum of 4 or 5 hallway strolls, breathing exercises, more time out of bed in a chair...and no unusual complications.  If anyone in the area wants to visit later this week, John should be up for some company.  And -- rumor has it -- he's getting a private room.  Yea!
Thank you (I say that a lot and it's starting to sound lame...But I truly mean it) for keeping us in your hearts, thoughts and prayers...I'll let you all know how things progress...Nancy

The Day After...

After a 7-plus-hour procedure and a 15-plus-hour wait, John came through surgery with flying colors.  Dr. Low came out to the waiting room to deliver the good news that John had remained stable throughout the entire procedure and he has every confidence that John will convalesce well.  He said that John's positive attitude -- which has actually been a huge support for me through these last few months -- is indicative of a patient who will recover well from this procedure.  We expect a pathology report in a few days which will tell doctors whether or not John will need any post-operative chemo.  We are, naturally, hoping results will be negative.
As I write this, John's having his first post-surgical "meal:" A high-calorie breakfast/lunch/dinner in a bag.  Because his new esophagus-made-from-stomach will take some time to heal, he will be enjoying his "Bag-O-Meals" via a feed tube connected directly into his small intestine for a while.  (I wonder if Martha Stewart has any recipes?)  He is now in a regular hospital room after spending last night in post-surgical CCU.  His nurse, Jeanine, is great.  (For single men out there, she's 45, extremely attractive smart...and I would highly recommend a coffee date.)  It's still too soon to know how long he'll be in hospital, but I would guess it will be at least 10 days.
Bless you all and thank you for your care.  Thank you to Laura, our neighbor and best-friend-ever from Bothell for staying with me all day yesterday while waiting.  To Gail (thanks for the jigsaw puzzle -- it will go to the Bellingham Cancer Center after we put it together);  Birch Bay-neighbor Sunny (thanks for the Cougar -- it's gracing John's hospital room); sister-in-law Linda and John's brother Ray for your visits, help and support.  Thanks to Mike and Kathy Wright for your gift.  (John hasn't opened it yet...He will this afternoon when he wakes up from his siesta.)  And thanks to my Mom who came down and wiled away some time with me during the long hours yesterday.  Besides being my Mom, I'd pick you for a mother-in-law any day.  John's lucky to have you.  Your love and support means everything.  And for everyone who has been praying, lighting incense, shaking rattles, chanting...whatever...Thank you!  I'll keep you posted...Nancy

Surgery Tomorrow

Well we're finally down to crunch time.  Packing the cats and heading to "Grandma's" house this morning.  John will start his pre-surgery prep this afternoon.  Not unlike getting ready for a colonoscopy, only much less "beverage" to take.  Just one small bottle.  Breakfast this a.m. will be scrambled eggs and toast.  I feel kind of bad making such a mundane meal since it will be a while before John gets to eat real food.
It's a drizzly morning with rain in the forecast for a few days.  But the bergenia in our front yard is in full pink bloom.  The dogwood and ginko trees are nicely leafing out.  And I harvested the first crop of rhubarb which I'll take to Mom's and make a batch of sauce for the two of us to have in the mornings for breakfast.
I have every confidence that John's surgery will go well.  After all, he has all of you rooting him on, praying for him and working on those jigsaw puzzles, sending "good juju."  Since John's procedure is a long one and he'll be in recovery for a while, I won't have any concrete info until late tomorrow.  So I'll probably be posting either very late Monday night or on Tuesday.  Thank you for your friendship and support.  You are all appreciated more than I can ever say.  As Peter Pan said, "Come, everybody.  Here we go!"....Nancy

Final Tests Before Surgery

Yesterday was a 6-hour day at Virginia Mason, having a CAT scan, meeting with John's surgeon Dr. Low and having a consult in the anesthesia clinic with a very young Dr. Adcock (who may or may not be John's anesthetist on day of surgery).  Surgery is, indeed, scheduled for May 16.  So the blog may be a little quiet between now and then as -- mercifully -- there is only one appointment left to take care of between now and then.  Sometime within two weeks of surgery John needs to have a blood draw to type his blood. Antibodies and who-knows-what-else can then be matched to a supply which will available in the unlikely event he should need a transfusion during his surgical procedure.
Dr. Low (surgeon) went over the actual procedure which will take anywhere from 6 to 9 hours.  They will initially "go in" under John's sternum (breastbone) and somehow not have to go through muscle.  For those of you who have had abdominal surgery, myself included, you know this is a plus.  A second incision will be made on John's right side between two ribs.  Between these two locations, Dr. Low will remove his esophagus and lymph nodes in the previously cancerous area, take his stomach and refashion it into a tube-like structure and create a new esophagus.  The result will be a much smaller stomach and a "new" esophagus.  The removed organ(s) will be sent to pathology for a 3-4 day examination, looking for any malignant cells.  We are hoping that the path report will show only (if any) dead cancer cells.
So we're about halfway there and, thank God, all the progress has been positive.  Thank you so much for the cards, phone calls, prayers well wishes on this journey.  I know I keep asking, but keep those prayers and good vibes coming.  You are, each one of you, so very much appreciated.
I'm also offering you a challenge:  Beginning May 16 (when John goes into hospital), get a jigsaw puzzle.  Spend some time with your family, or go solo, putting it together.  Have fun, think of John and -- after your puzzle is completed and you've taken the requisite photo of your accomplishment -- take it apart.  Put it back in the box and take it to your local cancer center or hospital for use in a waiting room.  Those puzzles help patients, friends and family connect with each other and for a short time forget their troubles.  As Martha Stewart says, "It's a good thing."  I'll stay in touch over the next few weeks and will definitely let you know how things go in May.  Love to you all...Nancy

Endoscopic Ultrasound Tests Great!

We arrived home this evening after our first post-chemo/radiation test which was an endoscopic ultrasound (EUS) at Virginia Mason.  Dr. Jiranek, who performed John's first EUS in February, was delighted to report that today's test showed a dramatic change.  The tumor has, basically, disappeared and John's esophagus looks smooth.  That is not to say, however, that this is conclusive evidence that the cancer is gone.  There could still be malignant cells within the esophageal tissue that will only be confirmed with a pathology report after surgery.  But today's news is the very best we could hear.  Your prayers, well wishes, good vibes, positive juju help us more than we can say.  Keep it up!
After today's appointment, our Bothell neighbors and dear, DEAR friends (Bruce and Laura Scott and their daughters Lanelle and Monica) met us at the Rhododendron Room restaurant at the Inn at Virginia Mason for dinner.  I'm not sure if John was happier to see them or eat something!  It had been 24 hours since his last meal and nearly 12 hours since he'd had even a glass of water.  It was a wonderful way to celebrate good results.
Our next step is to return to VM next Wednesday, April 20, for a CAT scan and to again meet with John's surgeon Dr. Low.  Final decisions about the timing of surgery, currently scheduled for May 16, will be made at that time once Dr. Low examines all John's test results.
I can't believe it's the middle of April.  Normally people say, "I can't believe..." because time goes so quickly.  But, for me, time is going very slowly.  At the ripe old age of 55 that should be considered a gift.  But in this respect it's not.  I'm am anxious for autumn when all of this is behind us and John is well into his recovery and life can return to "normal"... or whatever normal will be.  But a gift, a true gift that John and I have received is the awareness of the honest love, friendship and support from all of you and from the people who have touched our life during this time.  We can never, ever repay you for what you have given -- and continue to give -- us.  Just know that you are all in my prayers.  Thank you...and onward we go.  Nancy.

Last Chemo Center Appointment...For Now....

Today was our last visit to the chemo center at St. Joe's for a final blood draw.  And as John's counts all looked great, his picc line was removed.  Hooray!  He is not slated for any further chemo UNLESS pathology lab results from his upcoming surgery show any sign of live cancer cells.  If so, he will have to undergo one or more rounds of chemotherapy after surgery.  We are holding great hope that nothing post-surgery will be necessary.
The nurses at the chemo center played Kool and the Gang's "Celebration" and all gathered around John (in his infusion recliner) blowing bubbles ala Lawrence Welk in farewell.  Very kool...I mean cool!  Both John and I hope to see these fabulous nurses again -- ANYWHERE but the hospital.  On a personal level, I continue to be grateful and in awe of the kindness and generosity shown by the many healthcare professionals that have crossed our path.  I am humbled by their caring spirit.  And I am thankful for you all and your loving support and prayers...Onward...Nancy

Radiation Therapy Is Finished!

Today was John's last pre-surgery radiation appointment. Yea! But believe it or not, it's somewhat bittersweet. Our daily trips to the cancer center became routine, giving us a sense of stability in all the craziness. And we're sorry to say goodbye to people who have become like members of our family. Although it's not a permanent goodbye...There will be follow up appointments in the coming months!
It appears that I've done a good job in keeping John's weight up. (It's like Baskin-Robbins in our freezer right now.) The only time you'll hear a doctor tell you that it's good to carry extra weight is if you ever have to undergo chemo and/or radiation treatment. As Dr. Taylor (John's radiation doctor) put it, John's body has been "running a marathon."  There is a natural tendency for the body to try to continually heal after daily bombardment of radiation. And that burns tons of calories.
So all that's left in this stage of the game is to see John's chemo doc, Dr. Nestor, on Monday. He will hopefully give the go-ahead to have John's picc line removed either Monday or next Wednesday (his regularly scheduled picc line dressing change day) at the latest.
We have been in contact with Sonia Kunz, Virginia Mason's thoracic surgical department coordinator in Dr. Low's (John's surgeon) office. Our next step will be to go to Seattle sometime around April 15 for a second endoscopic ultrasound which will give a true picture on how the tumor responded to chemo/radiation and start the process toward surgery. We'll have to go back sometime around April 20 for a cat scan and any other "medically creative" pre-surgery tests Dr. Low will want to have done. Surgery itself will most likely be the first part of May; but it depends on how fast John heals from the radiation and what VM's tests show.
I know that so many of you have offered help. Well there IS something you can do. Pick up a 500 or 1000 piece jigsaw puzzle and donate it to your local cancer treatment center. Those puzzles serve not only as a welcome distraction to patients and family going through cancer treatment, they provide an opportunity for people in waiting rooms to come together, share stories and form a bond of support for each other. Those puzzles got me through the last six weeks and introduced John and I to some great people going through the same thing we are.  And it's the people, like you, who are not only helping us make it through this journey, you're helping us to live through it.  With love and thanks...Nancy.

Some Good News and Some So-So News

We had some good news at today's daily radiation appointment.  Dr. Taylor said that John would be done with radiation March 25.  Yippee!  We thought he would have to go through to the 30th.  And double-good news is that films confirmed that the tumor has shrunk.  We suspected as much because John's swallowing has improved.  (Tonight's dinner was  gratins of prawns with carrots/leeks and a side of broccoli.)
The so-so news was John's blood counts.  Every Wednesday we have to go to the chemo department at St. Joe's Hospital to have the dressing changed on his picc line.  They draw blood at the same time and check white cell count, nutrophil count, red cell count, platelets, etc., etc., etc.  Today's results showed that his white and nutrophil counts were very, very low and he was advised to "avoid public places for the next couple of days."  The wine department at Haggen's is about as public as you can get.  So John's home today and tomorrow.  Which is good.  The shot that he received last Friday to stimulate his bone marrow to generate white cells is kicking in -- despite of having a low reading today -- causing him some severe aching in his legs and back. As of this writing he is firmly ensconced on the couch with a quilt and kitty nearby, watching Mariner spring training.
I say this in nearly every posting, but "Thank You."  Thank you for for sticking with us during this whole process.  Thank you for your positive well wishes and prayers.  And thank you for caring.  I'll stay in touch...Nancy.

Second (and hopefully final) Round of Chemo

I'm typing this from the infusion room at St. Joe's Hospital.  John's having his second -- and we hope last -- infusion of both Taxol and Carboplatin.  We started our day at 7:30 a.m. at the Bellingham Cancer Center for John's daily dose of radiation.  The treatment seems to be having a positive effect as his swallowing has vastly improved.  This means that the tumor is shrinking which is the goal.  And in spite of 16 radiation treatments, his esophagus is not terribly sensitive.  Dr. Taylor recommended Maalox in the morning to grease the skids, so to speak, and prevent soreness when eating.
We had been hoping that John could avoid hair loss that's common with chemo.  However when a small, black, hairy animal took up residence in our shower every morning after John's "toilette," it was time to lose the Robert-DeNiro-in-Kenneth-Brannagh's-movie-"Frankenstein"-look.  Too bad it's not Halloween; John would make a great Uncle Fester Addams.
We are officially half-way through pre-surgery treatment.  After tomorrow's radiation treatment, John will have a CAT scan to reevaluate the positioning of the radiation beams to ensure that the tumor is still in the bullseye.  Time is moving ever so slowly, though, as John keeps asking, "Is it July yet?" Hopefully by that time all of this will be behind, except for the expected follow-up monitoring.
So, whew!  The treadmill continues.  Your thoughts, prayers, friendship and love are carrying us through.  Thank you...Nancy

Spring is Here...And So Is Shedding Season...

Our weather seems to be turning towards spring.  And spring has always meant shedding season for our cats.  Well, John has joined their company.  I guess he is not going to be immune to the hair loss that is common with chemo therapy.  So I'll get him a supply of cherry suckers and a hat, ala "Kojak."  When his hair grows back perhaps his little bald spot at the top of his head will fill in?  We're almost at the halfway point for his pre-surgery regimen.  You are all so important to us on this journey.  As always, with love...Nancy

Back Home

John was "sprung" from his isolation room at St. Joe's and is now back home.  His white cell count and nutrophil count (kind of like "baby white cells") are, while still low, acceptable.  He should be back at work on Friday.  Apparently this kind of a reaction, including his rash due to 5FU, is not uncommon.  It would have been nice to have been given a heads up that this COULD happen.
While in hospital, John was transported each day for his radiation treatments.  I started my day meeting him at the cancer center then went over to the hospital to spend the day.  I took responsibility in supplementing his meals with oatmeal raisin and chocolate chip cookies from the cafeteria.  Which was a good thing.  The old joke that hospital food will kill you is really not a joke at St. Joe's; it's reality.  The hospital cafeteria received a facelift and food overhaul about a year ago.  But the overhaul has not extended to patients' food yet.  Meals, usually with some kind of mystery gravy and obligatory vegetable of peas, beans or carrots (I would not survive!) also came topped with a fossilized-thinly-sliced-red-beet garnish and a sprinkling of diced dried chives.  Thank God he's home.  Tonight's dinner will be twice-baked stuffed potatoes with bacon and sauteed mushrooms...
Next on the agenda will be his Taxol and Carboplatin infusion next Wednesday.  Your prayers, wishes, and friendship are carrying us through.  Until later, we send you loving thanks....Nancy

A Stay at St. Joe's in Bellingham

John spent all day yesterday (Saturday) on the couch snoozing with the kitties and eating; mostly snoozing.  At bedtime around 8:00 I gave him a hug and thought he felt "warm."  So I took his temp, twice, and both readings said 101.2.  So I called the after-hours on-call line and spoke to Dr. Kominsky, Dr. Nestor's colleague, who was on call.  He said to take John to emergency.  So off we went in the snow and about an hour later arrived at St. Joseph's.  Blood tests showed John's white cell count had dropped to "1."  Normal is around "8" or "9."  His level made him susceptible to any kind of virus, infection, etc. so he has been admitted.  Dr. Kominsky came by this a.m.  You could have knocked ME over with a feather.  This young guy comes sauntering into John's "isolation" room cool as a cucumber.  I took one look at him and thought, "Hey, Junior, your dad's in the room down the hall" when he introduced himself, "Hi, I'm Dr. Kominsky."  I am so old and so married...but this guy looks like the cover of a Harlequin romance novel!  John knows several people who have had the misfortune of being diagnosed with cancer who have had Dr. Kominski as their oncologist.  Everyone has had only the highest praise for this young (and I mean young) doctor who, as one person put it, is a genius.  Together with John's oncologist, Dr. Nestor, I feel John is in excellent hands indeed.
His rash is getting better and his lips are just about back to normal.  Once his white blood cell count improves, they will release him.  We're not quite sure what the plan is for replacing the 5FU, which was the continuous infusion.  More surprises in store tomorrow, I'm sure.
It looks like John will be a guest at St. Joe's for at least a couple more days.  The hospital will transport him to his a.m. radiation treatment(s) located just 3 minutes down the road.
I will keep you posted.  Thank you for keeping up with us on this bumpy, every-changing ride.  Gratefully yours...Nancy

Oops...First "Bad" Day

Today is John's first "bad" day.  He's having some nausea and the rash/swollen lips are not going away.  So he's taking his first sick day from work in, literally, 13 years.  I guess he's entitled.  I'll keep him pumped up on full doses of Benadryl since he's going to be home and able to sleep.  As I write he's snoozing on the couch in front of the fireplace with Abigail and Token curled up with him.  There's nothing like "kitty comfort" when you don't feel well.  Fortunately we are well stocked with ginger ale, homemade chicken stock and -- of course -- tons of ice cream.  And there's some leftover lobster mac & cheese should he want some comfort food.  It's trying to snow but it seems Mother Nature can't quite make up her mind.  We were spared the recent snowfall with the bulk of this past week's winter blast hitting Mt. Vernon, about 40 miles south.
Any "feel-good-juju-vibes" you can send John's way would be much appreciated today.  Thanks for checking in.  Nurse Nancy signing out....

Happy Birthday

Today's John's birthday.  And in honor of his birthday, his skin lit up like a birthday cake and his lips swelled up like a birthday clown's.  (His words, NOT mine.)  So immediately following today's 8:35 a.m. daily radiation appointment we went to the chemo clinic where he was disconnected from his 5FU pump. Luckily his chemo doctor, Dr. Nestor, was at the clinic and felt that John had developed an allergy to the 5FU.  (See, I told you "FU" stood for something!)  As of this posting, John is at work (sans pump) with lips that would make Meg Ryan jealous and a supply of Benadryl.  He has an appointment with Dr. Nestor this coming Monday where he will be prescribed with an alternate chemo recipe and hooked back up to his pump.
Happy birthday, John!  Hope tomorrow's a little better for you.  And I hope this posting gives you all a bit of a smile.  Thank you for your prayers, well-wishes, love and friendship.  Right back at you!  Nancy  

End of Week 1

We've finished John's first week of chemo and radiation treatment.  I am so happy to report that, so far, all is going better than expected.  His appetite is great and he has not suffered from the dreaded nausea, muscle spasms, extreme fatigue that accompanies chemotherapy...yet.  Today was his first 5FU pump refill (1 down, 5 to go including this one).  Two weeks from today will be his next infusion of the other two chemo drugs.
Although time seems to be going every so slowly, we seem to be settling into somewhat of a routine. Friday is John's birthday and he has requested lobster mac & cheese.  Talk about spoiled!  Sunday we are planning to meet his brother and wife, Ray and Linda, for dinner at Mambo Italiano in Bellingham for a bit of a family celebration.  Italian -- particularly pasta -- seems to be John's cuisine of choice these days.  It's nice to have something besides cancer on the social calendar.
We have met some wonderful people on our journey thus far, both medical professionals and fellow patients.  Getting cancer is like joining a weird, exclusive club.  Not one with particularly great perks, however, but one that reinforces one's faith in humanity.  Some people's stories are inspiring and some make you thankful for your own lot in life.  People you meet for the first time become "family" as you share stories and experiences in hospital and clinic waiting rooms.  No one walking this path is walking alone.
So not much to actually report this week which, I guess, is very good indeed.  Your thoughts and prayers, blog comments and love are such support for John!  Onward we go.  Thank you for coming with us...Love and thanks to each of you,  Nancy.

First Infusion

Yesterday was "The Big Day."  Arrived at St. Joe's at 8:00 a.m. for start of chemo.  After settling into our "suite" (hospital bed with appropriate hospital-equipment accoutrements and fashionable curtain walls), John was prepped to receive his chemo with an IV regimen of steroids, anti-nausea meds, Benadril and yet another blood test.  Two hours and 45 minutes after our arrival, his 4-hour infusion finally got underway.  He received a 3-hour infusion of Taxol, the stuff that makes your hair fall out, followed by a quicker infusion of Carboplatin.  I was on hand to fetch ice cream, tea, juice, lunch -- which came from the hospital cafeteria's deli and was very good -- and work on my stash of saved NY Times crossword puzzles.  John had his very own nurse, Susann, who happens to enjoy exploring the world of wine and making beer.  So the time passed quite quickly as they discussed wine; beer; visiting Howe Sound Brewery in Squamish, BC when Susann and her family head to Whistler this coming week ("Ask for Dave and tell him 'John sent you.'") etc., etc.  So my husband has added yet another female groupie to his entourage of women who think he's an amazingly- knowledgeable  good listener who gives them his rapt attention as they discuss their personal wine preferences.  Little do they know!  Only a wife knows her husbands "listening skills."
After chemo it was on to the oncology department where John hooked up with his new best friend:  His very own 5FU infusion pump.  He gets to live with the pump 24/7 including bathing time, bed time, and any other kind of time for the next six weeks.  I'm not sure how much "other kind of time" there will be with 5FU literally hanging around.  Getting dressed this morning and figuring how to feed tubing through t-shirts, dress shirts, pants, etc. was comical.  And cats Token and Abigail added to the challenge as they naturally think that "5FU" is some new kind of high-tech kitty toy.
After getting hooked up to "5FU" (you know what WE think the "FU" stands for), it was on to a 5:00 appointment at radiation for John's first zap.  We were back home around 6:15 that evening.  Talk about a tough day at the office!
This morning we were back for a 7:30 a.m. radiation treatment.  And I later chauffeured John to work for his 10:00 start.  Since we're not sure how his chemo and anti-nausea drugs will affect him, we thought it best that he not drive until we know for sure.
So far, so good.  But we're just getting started and have been told that some of the more uncomfortable side effects, like nausea, diarrhea or constipation, mouth sores, etc., don't show up for a few days.  But John's taking his meds to help either deal with or fight off whatever side effects might come his way.
At least now we're into somewhat of a scheduled routine.  Radiation will be Monday-Friday mornings at 8:35.  Every Wednesday will be a picc line dressing change and reloading "5FU" with another week's supply of infusion.  John's next all-day event will be in three weeks.  And, of course, there are interspersed doctor's appointments here in town.
And that's what's happening in our little corner of the world.  Thank you for checking in.  Our love and thanks, as always, to each of you.  You will never know how much your notes, postings, letters, etc. mean.

Okay...There's Been a Slight Change in Dates...

We're learning early from this experience that flexibility is the key.  Our life is no longer our own.  "They" tell us where and when to go and -- we go.  Tomorrow's chemo/radiation start-date has been changed to Wednesday, Feb. 16.  Tomorrow we'll go to oncology at St. Joe's to have the dressing on John's picc line changed and to radiation to have some films (and probably the infamous tattoos) done.
The picc insertion went without a hitch.  I got to don cap and mask (ala "Grey's Anatomy") and stay for the procedure to hold John's hand.  I did not, however, get meet either Dr. McDreamy or Dr. McSteamy.  Those of you who are "Grey's" fans will know who I'm talking about.  Naomi, the nurse who performed the procedure, was super.  She's an outstanding nurse with 35 years of practicing experience.  She and John discussed beer, in particular a favorite that she can no longer find at Haggen.  I think John should do something about that for her since he received such great TLC.  Anyway, he held up quite well with a minimum amount of grimacing.
And that's all I know for today.  I will keep you all apprised of chemo and radiation progress.  It's going to be pretty tough, with fatigue no doubt playing a big role in affecting John and his day-to-day life.
Again, thank you all.  My rosary beads are working overtime and your support is making all the difference.

Radiation and Chemo to Begin Feb. 15

Here we go...At last we have a schedule for John's pre-surgery treatment.  It's so ironic.  You desperately want someone to do something proactive to treat rather than just test, even though you know the treatment is not going to be a walk in the park.  John will undergo both chemo and radiation treatments beginning Tuesday.
On Monday, February 14, we have a 2:00 appointment at St. Joseph's Hospital to have a picc line inserted. This is a semi-permanent line that will provide venous (vein) access for John's chemo drugs.  After the insertion procedure is finished, we have a "teaching appointment" with Tara, one of his oncology nurses, to get us better acquainted with the chemo process and answer any questions.
John will receive two chemotherapy drugs twice over the treatment course (hopefully on Tuesdays, one of his days off); Paclitaxel (also called Taxol) and Carboplatin.  These infusions will take about 4 hours.  In addition he will be wearing a pump 24/7 that will provide a continuous injection of a third chemo drug called Fluorouracil (also known as 5FU).  This pump infusion will get changed once a week.  John will undergo his first actual infusion at 8:00 a.m. Tuesday morning, February 15.  His oncology nurse will also check his pump at that time to make sure everything is working properly.
At 1:15 on that same day, John has his first radiation appointment.  He has already been in for his  "simulation" appointment where a mold of his body was taken and a pre-alignment for the radiation was mapped out.  Right now he has three plastic squares marked with an "X" where the radiation will be aimed stuck on his body.  His radiation tech will probably mark these spots with permanent tattoo dots (both of his sides and front below his sternum) and remove the tape on Tuesday before beginning treatment.  After this first session, he will be going in daily -- Monday through Friday -- for radiation therapy.  Subsequent sessions will normally take only about 15 minutes except for the days when he will have a doctor/nurse consult.
The cancer support team in Bellingham is really good.  I met with a dietician yesterday who specializes in nutrition for chemo/radiation patients.  Her name is Cathy Flanagan.  But here's a surprise.  I knew her as Cathy Winters.  She was my first roommate at Wazzu when I first pledged Sigma Kappa Sorority!  Haven't seen her since she graduated from WSU in 1975.  It's a small world.  In addition to consultation on nutrition for chemo/radiation treatments, St. Joseph's offers a free case of Ensure each week for a period of up to three months for patients.  I have John's first case of vanilla Ensure in the pantry, along with Hershey's chocolate syrup, frozen berries, maple syrup and anything else I can use to flavor this supplement for him.  I think food will become a challenge for him as radiation, in essence, burns the area at which it is aimed.  In John's case it's the bottom of his esophagus which will probably make swallowing painful over time.  So I'm also reading up on nutritional popsicles made with silken tofu and fruit, egg dishes, cheese dishes...all the things doctors normally tell us not to over-indulge in but are softer, easier foods to swallow.  For cancer patients, they want their weight to be kept up and they place a big emphasis on protein intake to help the body heal.  Who would have thought John would hear the words "Don't try to lose weight"?  I will have my own stash of 1% milk, fruits and veggies...And TRY to stay out of John's ice cream.  I have also been given nutritional ideas on how to combat the nausea that usually accompanies chemotherapy that we can use in addition to the Compazine and Ondansetron prescriptions.  We have a good supply of ginger tea, green tea and green tea with mint.  These will be especially helpful in keeping John hydrated during the course of his treatments.
How long will the treatments last?  About six weeks.  At the conclusion he'll have about two weeks to recuperate before going to Virginia Mason for his next endoscopic ultrasound and the subsequent action.
So that's all we know for now.  Many of you have walked this path, or know someone who has had cancer and been through it all.  Statistics show that 50% of men and 30% of women will have some form of cancer.  Pretty scary.  But with the love, prayers and support you are all giving us we are taking these next steps with strength and a positive attitude.  I've said it before but I'll say it again...We love each of you and thank you.  We mean it.  Even though you're not physically here, we're taking your hands and heading down this road together.  I'll keep you posted on John's progress.