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