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…

 

3 Comments

  1. Happy Thanksgiving to you and to Karen. Hope all goes well with the big trip to see Sebastian. When are you leaving, when are you getting back? It’s snowing in Scappoose? That’s pretty cool, but sounds like you guys get a lot of snow during the winter…

  2. Hey there girl… Great to hear from you! We leave on the 9th of December and are gone until January 11. A bit more than a month. Very exciting! It has snowed here, but they say it will warm up by tomorrow and the rain will wash it all away. Happy Thanksgiving to you and your family! I love you!

  3. While this year has certainly been a roller coaster ride for you, I’m so glad to hear you’re able to go to England. Hope the trip goes well. We’ll be thinking of you and Karen. Nothing better than grandbabies! Have a wonderful holiday season. Love you both.

What Are Your Thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s