Hope

Hope

Hope is a happiness held in the heart
When happiness seems to be gone
Hope is a quiet joy deep within
Encouraging us to go on.

Hope is a guide when we seem to be lost
That can help us in finding our way
Hope is a strong immovable force
That our doubts and our fears cannot sway

Hope is a light that burns in the night
In a place where a miracle starts
And every good thing will come in it's time..
As long as there's hope in our hearts.

This was passed to me from another survivor in Canada. I thought it encompassed hope as a force.

Spring Break 2009

What a great moment to pause, be grateful and live in the moment.  I am squeezing in a restful time with my family in between chemo 5 and 6. 

After spending winter break five airplane hours away in a dank DC  hospital having the MOAS and being separated from my kids at  Christmas, it is such a joy to get to spend spring break five  airplane hours away with them in one of our favorite places, the  Westside of Maui.  

I was worried about going at all feeling the full affects of Folfiri  this time around and concerned about if I needed a doc what would I  do. My hair is coming out bit by bit.  My bowels are a constant  concern with folfiri reeking its havoc.   Throw in the fact that we  fly standby and it almost seemed not worth the effort.  Happy to report that chemo symptoms are GREATLY reduced in favorite  places. 

Tears of sadness from hospital hall marching at Christmas  time have been replaced with tears of joy at Easter time while  enjoying church services outdoors, 30 yards from the ocean with the  turtles, whales with my favorite people.  We all whooped and cheered as we ate our dinner at the picnic tables  last night and watched some playful humpbacks jumping full-bodied out  of the water.  

I'm drinking up every last minute of this special time  with my family.  Off to watch the family take a morning swim.   Maybe tomorrow I'll be  feel up to joining them. :)   

What's up chemo-sabe?

I usually live in two worlds.  The normal place where I see my kids play sports, take a hike with my love, go to the grocery store and come up with nice things for dinner.  Then there is this other world were I hear folks speak of  'counts being to low for chemo' and waiting patiently for yet another doctor visit or scan. The goal is to keep the cancer world from taking over my normal world for the least amount of time.   It seems to be easier with this new chemo regimen.

I'm not wanting to jinx myself but have to say the chemo so far hasn't been as rough as the last time. I'm going in for round 3 of Folfiri tomorrow.  The good news is that I have only had small bouts of nausea with this one and while very fatigued, I don't spend the entire day laying down. 

Let's hope it stays this way.

The worst down side is the docs don't really want me driving while taking certain anti-nausea drugs.  So...I can't pick up and take the kids anywhere.  I guess if you live in TO you'll be happy I'm adhering to this wisdom.   The drugs make me very sleepy.  I am trying to gauge if I am able to get away with using a bit less medication and still keep the nausea away.  

Thanks again for your prayers, support and love!  I am always amazed by the beautiful people in my life.  

Jennifer

The news that Jen and I have been anxiously waiting for has come...we're out of here!  At this writing, we're about an hour or so from being discharged, Jen has everything disconnected and she has normal clothes on for the first time in a two and a half weeks (I dare anyone to contemplate the thought of wearing one of those hospital robes for 16 days).

Now it's off to Dulles, on to LAX and hopefully in the door later tonight.  We'll have news of our return when we get there.  Wish us luck with the airlines, as there's weather on the East Coast today...

Turning the Corner

In our spare time, Jennifer and I have pioneered a new, highly scientific, peer-reviewed metric for patient progress:  the Tubal Extraction Quotient, or TEQ.  To calculate TEQ, one takes the number of tubes inserted into the patient's body (presently 4) and divides them by the total number present immediately after surgery, ten in Jen's case.  The lower the number, the greater the degree of patient progress.  By this measure, Jennifer's TEQ is now down to 0.4, a marked improvement by any standard and the single patient in our comprehensive study has confirmed that patient spirits increase in direct response to decreased TEQ.  Our findings will be laid out in a co-authored research paper and published in the February issue of the Journal of the American Medical Association but if you can't wait, abstracts are currently available online for $49.95.

The big victory today was getting her nasogastric, or NG tube removed.  This bad boy goes in the nose, down the throat and into the stomach.  Yeelch!  Its purpose is to keep the digestive tract empty so everything can heal up, and with that out now Jen is feeling a whole lot better and we may actually be able to get out of here by sometime mid-week; we'll see how that develops as time goes on.

We were able to video chat with Em, Matt & Laura again this afternoon and it was great to stay caught up.  Of course, it's not quite the same as being home, but from today's vantage point we think we can make out the light at the end of the tunnel.  Here's wishing everyone a great week and hopefully we'll have news of plans to come home soon.

Happy New Year

New Year's Day passed uneventfully for us as we logged another day on the road to recovery.  We've settled into a routine in which we try to get in three daily walks around the hospital corridors for exercise.  Thankfully, it's a big hospital but I'm afraid we've come pretty close to seeing it all.  It's been pretty cold out here so going outside hasn't been very appealing, and Jennifer is still encumbered with a lot of IV bags and such, but nevertheless we yesterday were able to find a corner of an interior courtyard here where the sun was streaming in.  Even though the temp was only in the thirties we were actually able to get quite comfortable in the sun - the first time Jen has been outside in eight days.  I can't tell just how good it felt to have the sun on our faces.

We've also been able to make the acquaintance of other families who are here from around the country to see Dr. Sugarbaker.  One such family is a couple from Portland, Oregon named Randy and Kristin.  They have two young children ages 3 and 5 back home.  Kristin had the same surgery Jennifer had, plus some post operative chemo, and they have been here since around 13th or so.  Another family we met last night just had their surgery a couple of days ago.  They are from central Tennessee and have young children as well.  Really nice people all, and in getting to know them one is struck by the random nature of disease, it's willingness to strike both young and old, of lives interrupted and plans changed.  But something else is clearly present too:  families coming together, love offered, accepted and shared, and strength of faith and character.  It's nice to get to meet people like this and helps to provide a human touch in an environment of literal sterility.  

Jennifer's sister Juliette returned home on New Year's Eve and, after the requisite 4 hour fog delay in SFO, is now safely back home in Chico, CA.  We both want to thank her for coming out to help, and at no small personal sacrifice of time and resources.  Thanks Juliette!

Happy New Year to everyone back home!  We continue to appreciate your warm comments and look forward to seeing you, and hopefully soon.

Coincidence? We Think Not

We were sitting around this evening thinking of the circumstances which brought us here to D.C. and we couldn't help but marvel.  In the midst of an acute situation, Jennifer became aware (through a great deal of research and networking on her part) of Dr. Sugarbaker's work out here; a phone call to his office a week and a half ago, as well as speaking to other patients of his this week, revealed that wait times to see him, much less have him operate, run months in advance.  As it so happened however, he had a patient drop out and he wound up with a spot on his schedule for last Tuesday.  O.K., fine, now we need to get out here, it's the middle of the Holiday travel season and we have no plane tickets.  Not to worry, Juliette had flight miles to use on United; no matter that she's had no success in the past at being able to use them during busy travel times.  In fact that was why she had so many miles built up, she could never use them.  A couple of phone calls was all it took for Juliette to secure the last seat available on her flight from Northern California, and to get Jennifer one of the last seats on her flight from LAX.  Oh, and a non-stop without any connections to make while feeling crummy would be nice too.  No problem!  Truly, the Lord's providence has been great, and He has heard our prayers.

Jen is getting stronger by the minute, it seems.  She's taking longer walks and at quicker paces, so she's really coming along nicely.  Have a great evening everybody.