Happy New Year

We spent the day hanging out at the house, mostly watching The Gilmore Girls.  We went to bed at 10:00 and ended up staying awake talking until after midnight.  We were there, in the dark, whispering so as not to wake the baby, and saying… woo hoo! as we heard the fireworks go off somewhere in town.  It was nice.  Us, together, quietly ringing in the new year together.  No better way to do it actually.

We also happened to be awake the next morning at 8:00 am Lancaster time, which was midnight back home in Scappoose/Portland.  We were able to say another quiet woo hoo, still together.  Nice.  Two celebrations in an 8 hour period, pretty good.

As for resolutions…  personally I told Karen I want to be kinder.  Just kinder in general.  I know I’m pretty kind as it is, but I told Karen there’s always room for improvement in the kindness department and definitely always room for more kindness in the world.

Merry Sickmas!!

Yes, it’s true… we have a house full o’ sick people here.  Thankfully Karen and I have so far successfully avoided it, but Sebastian, followed by Mary and Martin, have been sick.  Sebastian (who started with it) seems to have broken his fever, but Mary and Martin are both running some decent temps.  We opened presents this morning and then I was sequestered to the guest room  (our room while we are here) by Karen.  Karen has been running around taking care of the little gent and Mary and Martin have been trying to sleep, taking tylenol, and battling the temps.

Here’s hoping everyone feels better by tomorrow who has been sick, and those of us who haven’t caught it still haven’t…

Here’s also hoping that all of our family and friends have a holly jolly one filled with love, laughter, joy, and more love.  We wish we could give each and every one of you a Christmas hug today….

Two Weeks In England

Since I’ve been super remiss about posting here on the blog about our adventures in England, I thought I’d do a bit o’ recap of the highlights from the last couple of weeks….

Arrived, fussed over the little boy, dealt with the whole shot thing by ending up going to Manchester by train to meet with Dr. Yin and get the first shot (Karen and I then made our way from the clinic by taxi back to the train station in Stockport and then by train from Stockport to Manchester where we did some shopping and finally from Manchester back to Lancaster), many trips walking into town for shopping, have had an occasional pasty, a nice visit with Ashley who came in on the train from Edinburgh, more playing with and fussing over the boy, a drive to the Trafford Center mall near Manchester for more Christmas shopping, more walks into town (we do it at least once daily), more fussing over the boy, wrapped purchased Christmas presents, petting Wicket and Ziggy, and still more fussing over the boy.  He’s the cutest every, I’m just saying…

That’s pretty much been it.  I’ve taken some photos, though not tons.  Mostly of the boy.  We are gearing up for a lot of picture taking on Christmas eve and Christmas day.  Watch for those.

We’ve been here two weeks tomorrow.  The time has flown by really.  There’s tons of darkness here.  It doesn’t get really light out, like fully light, until about 10:00 in the morning and conversely it starts getting dark about 3:30 or even a tad sooner.  The sunrises and sunsets seem to take a long long time.  I think we only get about 6 hours of good daylight every day.  Strange.  At least we’ve had a lot of blue sky so far when it is light.  We like that.  We were expecting way more gray skies and rain.  Lucky.

A Peaceful Moment

This is something I wrote on the plane ride over to the U.K. a couple of weeks ago.  Tried to post it when we landed and couldn’t, then with all the business of getting here and such I forgot about it, until today.  I re-read it, liked it a lot, and so am posting it now.  It’s relevent, anytime really….

December 10, 1:20 AM, Pacific time

Sun coming up over the Atlantic.  Traveling in this plane, just having woken up from a nap laying across two seats and Karen (a miracle in and of itself).  Taking pictues with my phone out the window and listening to the Hip (80) playlist on the ipod on my phone. Bose quiet canceling headphones on.  The world is a beautiful place.

I’m having one of those moments… So filled with gratitude and wonder and love.  So much love I feel like this smaller body of mine might not be able to hold it all in.  Overflowing out of me as teardrops falling down my face.  It’s so quiet in here right now. All these people sleeping, watching the movie or listening to their own music.  All these people going somewhere…. To see someone they love, like we are, or to see somewhere new, or just making the journey home.  And here we all are together, on this plane winging our way across the Atlantic as the sun comes up. I’m listening to Good Life right now, and it really is a good good life.  Thank you thank you thank you thank you….

Maintaining

Getting the maintenance phase of this all worked out is… happening.  Had to go in again today (had the CBC yesterday) for another blood test (one of my liver function tests were high from last week and my doc, who is the hospital doc this week, didn’t get it ordered before we went in yesterday).  No biggie.  Just another slip sliding adventure coming back up our driveway.  Have to go in again today to get my shot.  The results of all of this tweaking of my maintenance (my doc lowered my shot dose to half last week as well as my pills from two to one after getting my blood work back last week and finding my white count wasn’t quite as high as he’d hoped)… I will, from now on, be on the half dose amount of both shot and pills.  They will not be raised back up.  The protocol calls for starting at the high dose and if the counts don’t go too low, staying at that dose, but if the counts don’t maintain well enough at the high dose it should be lowered to the half dose amount, which is what seems to work in my case.  My liver test from today also improved with the lower doses so the doc and all feel this is the dose for me.  We will see next week.  We’re hoping to get all this stable in the next couple of weeks… before we fly to England to see the kids and our grand boy, Sebastian.  I can’t wait to meet him!

To clear all this up…  I am now on half the shot amount and one pill a day.  Then, every three months, I take another 15 days of ATRA along with the continued weekly shot and daily pill.  The only thing left to finish working out is getting it squared away  with an oncology department in England to give me my shot every week while we are there.  Four shots in total.  Karen called and talked to them to start the process and got the contact info for my doc to call them.  Kaiser is going to package my shot meds so that Karen and I can carry them to England.  Karen talked to the TSA to make sure we had what we needed from the doc, paperwork wise, etc., to get through security.  So after my doc talks to the doc there we should, hopefully, be good to go.  Yay!!!

I’m not looking forward to the long hours of travel… we fly to Chicago from Portland then from Chicago to Manchester, England.  O’Hare is a bummer of an airport.  Busy, no good services (internet, etc.), and weather effected this time of year.  But hey, we’ve flown through there many a time so we are familiar with it and know how to deal with it well.  We are definitely seasoned travelers.  We make ourselves laugh we are so efficient….  Get to the airport, check bags, go toward security, stop to take off watches, put cell phones in the backpack, get to security and take out computers and take off shoes in line, go through the line… get some food for the plane, get on the plane, get out Bose headphones and laptop for movies if movies on plane aren’t any good and also iPod in case music is the thing, eat our previously purchased food, get to O’Hare, find some floor space in a terminal hallway near an outlet (they don’t have areas with plugins for computers, etc…. part of it being a bummer), plug in and put in a movie or two depending on amount of time, get on the plane to Manchester, repeat all plane activities mentioned before, get off the plane, bags, customs, train to Lancaster, stay up to what is a reasonable evening hour in Lancaster to combat the jet lag, and then crash for like 13 hours.  And that, ladies and gents, is how it’s done. It’s going to be a tiring long day, but it’s so worth it… and always kind of exciting.  I might say it’s tiring, but it’s also sort of fun while it’s all happening.

For now we have tiny bits of snow coming down and we leave in another hour and half to go back in to the clinic.  Tomorrow…  Thanksgiving and really taking time to be joyful and thankful.  As I said in an email to some of my family the other day… to quote myself…

I am thankful every day for the day itself, for my beautiful family loving me and me loving them back, for my friends who also love me greatly and who I love as well, and for the wonder and joy I feel just looking at the world around me.  It’s a glorious beautiful thing, this life.  So thank you both for the Thanksgiving dedication… I think Thanksgiving has, this year and moving forward, become my favorite holiday.  What better reason to have a day of celebration… to stop, pause, and be thankful and grateful in a very conscious way.

Happy early Thanksgiving everyone…

 

Day 15

It’s been a few days since I posted anything.  Not much happening around here, for me anyway.  Just laying on the couch being sort of tired as my numbers are down.  Blood draw tomorrow.  Here’s hoping the neupogen has done it’s job (had to get three more shots, for a total of 11… the last of which I gave myself today) and the white blood count and neutrophil count are up.  Tomorrow is technically my nadir (the low point) so even if the neupogen hasn’t given me raised numbers they should start coming up on their own.  I’m hoping for a more rapid increase because of the neupogen, but we shall see.  As to my tiredness… my red counts were down on Monday…. and according to reports  from Mom and Kev I’m looking pretty pale, which I always do when my counts are low.  The neupogen doesn’t do anything for the red counts, so we just have to wait for those to come up on their own.  They usually take a bit longer normally  Again… interesting to see what they will be tomorrow.

The good news is that I haven’t gotten a fever so far… knocking on wood now… and so haven’t had to go to the hospital this time around.  I’m hoping that holds and I don’t get one, and don’t have to go.  I guess if I do I do, but it would be nice not to.

The best news is that Karen comes home from England tomorrow.  I know she is having a hard time leaving Mary, Martin, and Sebastian, and I totally sympathize with all of them.  This long long distance thing is so hard.  I am glad though that she’s coming home to me.  I have been so well taken care of by Mom and have loved having her here, but I’m sure she’s ready to go home as well.  Mom says she’s loved spending this time with her kids… after all, when does a Mom get a chance to spend a month with her grown kids like this.  Pretty nice, even if the circumstances haven’t been ideal, it’s been wonderful.  I have missed Karen terribly though and am so glad she is going to be on her way to me in just under two hours.  It’s a long journey for her… she will be traveling for 18 hours… and she will be exhausted.  But, she will be home…  It’s been our longest time of separation and I can’t wait to see her face.

Back In

Well folks…. I’m back in. Spiked a fever and had to come in for antibiotics. My counts are very low… So the plan… I have to be here until my counts reach a certain level. Until then I’m here, on antibiotics every six hours…. And constant saline. We are hoping not too long, but it’s all number dependent… So we’re rolling with it. Mom’s been fantastic!

My sweetie made it safe and sound to Lancaster…. No real travel hiccups. I’m so glad. I love that woman!