Karen and I have been looking at houses in Champaign/Urbana online. For those of you who’ve been asking, and maybe for some of you who don’t know as of yet that this is going on… we are moving to Illinois. Why? Well, it’s pretty simple. Mary and Martin, and our grandson Sebastian, are moving to Illinois, and we want to be closer to them. Martin, our son in law, has accepted a teaching position with the University of Illinois. It’s a great opportunity for him and for their family.
We are excited about living near them. Karen and Mary realized recently they haven’t even lived in the same state, let alone same country, for ten years. First Mary went off to University in St. Louis, then she stayed there after graduating to work as a research assistant for a couple of years, and finally she met Martin and moved to England with him. Ten years is a long long time for two people who are so close to each other. It will be great for them to be able to see each other. And all of that doesn’t even cover how much we want to live close to our grandson, be a part of his life, watch him change and grow. We want to hang out with him, be a family with him, get to love him up close, and have him know us. It’s very important to us.
So we’ve decided to move… decided to make the huge decision to change our lives, leave the state I’ve always lived in, leave our friends, and my family. It’s big, and we aren’t doing it lightly. We’ve thought about this, a lot. We think it’s the right thing for us right now. There’s nothing more important than the people in our lives. We will miss everyone here, tremendously, but we are embracing this new adventure and moving forward full steam ahead to be with another part of our family.
Illinois… cold winters, humid summers, the midwest. It’s different. Not somewhere we thought we’d go, but we are excited about it. Being somewhere new to us (well, Karen lived in Illinois when she was a kid for a couple of years so it’s not totally new to her, but she was pretty young, so this will seem new), experiencing what that part of the country has to offer, using that also as a jumping off point to so many other places on that side of the U.S. We’ve already checked out the driving distance between Champaign/Urbana and many points over there. It’s cool to think how many great spots are within an 8 hour drive. Plus, we will be only a couple of hours from Chicago, which we fell in love with when we were there for the kid’s wedding. There are trains every day to and from Chicago. It’s going to be good.
We plan on coming back to Oregon every summer for a month or so, probably during the most humid month or even months in Illinois. We have an advantage in that Karen can work from anywhere, which makes this possible in the first place. That means we can come back for a month or two in the summer, staying with different people here, and she can work, not have to take vacation. Plus, I know people will come see us. Even if they don’t want to visit Champaign/Urbana, they will come to see Chicago, and we can meet them there.
It’s stressful… loads to coordinate, but so very good. And for those wondering about my treatment, etc… we have talked to my oncologist. He says people move all the time. The only thing we have to make sure of is to give them enough time to get all my records together to send to the new doc and clinic. Karen has talked to her HR about the change in insurance and we have a list of hematologists who work at a cancer center in Champaign/Urbana. We are going to try and get a consultation appointment with one or more of them when we go to visit in June. We will get all of it worked out. My maintenance protocol is very common.
Visiting in June…. Karen, Mom, and I are flying there in June to check out the area, look at homes (hopefully buy one…), and meet one or two doctors. We have a few days. We’re flying into Chicago and then driving. We’re excited about that as well. Never been there, new place. We love new places. We love exploring.
So there you have it… the big news. The big change. The big… big.
Just got a call from my doc’s office with the numbers from the blood draw yesterday. All were really good, except my white count was 3.2. That number isn’t bad at all in and of itself, but it puts it in the range where my maintenance dose is reduced to half. This has happened a couple of times before, which is why my blood is monitored every week… if my white count falls into a certain range it’s an automatic reduction. Anyway…. my doc has decided to leave me at the half dose during the time I’m in England, since this reduction in white count has happened before. This makes it easier for us while we are there so we don’t have to worry about whether the counts are over that reduction edge. The protocol calls for reduction to half anyway if this happens a few times. My guess though is that when we return he will probably increase me to the full dose again. I’ll also be on another 15 day round of ATRA starting the day after we get back. But that’s then… for now we are getting it all ready. We will go in today so I can get the shot and also will be picking up all the meds (the shot meds for the month, enough pills for the month, and then refills of other meds for me to take in case I need them… ambien, etc.).
I’m starting to get excited….. we are actually going to be able to go. I’m actually going to be able to go!!! Woo Hoo!!! I’m crying right now… life is so beautiful!!
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…
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.