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.

The Treatment Process Begins...

Today was John's first appointment with his radiation doctor, Dr. Taylor.  He will be going back next Tuesday (Feb. 8) for his "simulation" appointment.  At that time, they will map his body to ensure that the radiation treatments he receives will be specifically directed only at the affected area(s).  Those areas would be the tumor at the base of his esophagus just above his stomach and a couple of nearby lymph nodes that are slightly enlarged and "look suspicious."  Next Thursday will be his first appointment with Dr. Nestor who will be his oncologist (chemo) doc.
John will be receiving radiation daily, Monday through Friday, for six weeks.  Chemo, we think, will be one day a week over the same period.  We're hoping to schedule chemo for Tuesdays as that is John's "Saturday" and he'll have Wednesday (his "Sunday") to rest -- other than get to his daily radiation treatment.  All of his pre-surgery radiation/chemo sessions will be at or next-door-to St. Joseph's Hospital here in Bellingham and should begin the week of Feb. 14.
At the end of his treatments, there will be a two-week resting period before he goes back to Virginia Mason in Seattle for another endoscopic ultrasound.  A surgery date should be able to be scheduled shortly thereafter.
On the upside...His chemo and radiation doctors don't want John to lose any weight.  I never DREAMED there was actually one doctor -- let alone TWO! -- who would tell either John or I, "Don't try to lose weight."  Of course they want him to keep up his exercise routine.  He's on the treadmill every morning.
So as John's cook, chauffeur, laundress, personal manager, head cheerleader, scheduler, press agent, etc., etc., etc., I want to assure you that he is in good hands...both medically and personally.  There is an outstanding cancer support system available for patients and family through St. Joseph's Hospital.  But it does not compare to the prayers and support from you.  Thank you...I'll keep you posted.