The study drug! Finally!
Day 1 of each Cycle is now known to me as the "Day of Waiting." :) We arrived at 10:30 am, saw a new PA-C (who was wonderful, of course), did a round of study blood-work, waited an hour, was administered the study drug (an oral pill, thank goodness...three pokes in one arm was enough for me for one day!), waited a half hour and did another round of blood-work, then waited two hours and did a final round of blood-work.
While we were waiting, Brad did a lot of this....
Working...working...working...
After finishing my book, I caught up on my celebrity gossip...
I tried to sleep first, but waiting room chairs do not equal naps! So, People came to my rescue.
Next time I'm bringing a deck of cards. And more books! :)
So, the treatment plan looks like this: I have to be at Minnesota Oncology every week (starting this past week, and primarily Tuesdays) for vitals, blood-work, and administering of the study medication (I take the daily medication myself the other days of the week...but it's all about the study protocols.) Every fourth week is the beginning of a new Cycle, and the Day 1 of each Cycle is a "Day of Waiting." At week six, we do a CT scan to compare to my pre-study CT, to see if the drug is working. At that point we evaluate our treatment plan. The hope is that I respond beautifully to the drug and can remain on it for a L-O-N-G time (or a miracle, we definitely hope for that!) The longer I remain on the study drug, the more flexible the schedule gets (for example, after week 9 I would only have to go to the cities once every three weeks, instead of every week.) Once I stop responding to the study drug, we find other treatment options.
We will be doing a lot of this...and hoping that the weather cooperates.
How We're Doing
The kids have been amazing. Brendan (8) and Megan (6) took it harder this time, as they're older and understand cancer on a deeper level than a couple of years ago...but we make sure to talk with them as they need it. Brad, especially, takes a little time every night at bedtime to make sure they're doing alright, with some one-on-one time. It seems that they mostly want affection and reassurance from me (lots and lots of cuddling and being told that I'm right here and that I love them.) Both kids have wonderful teachers who are helping to keep an extra eye on them, but so far only normal kid behavior (tired behavior from school schedules, sibling behavior, etc.) has been seen around here. We keep our eye on it, as Brendan is pretty sensitive, and Megan tends to internalize. Emily (3) has been great as well, mostly in part to Brendan and Megan being fairly calm, and also due to the added attention she's been getting from grandparents. She doesn't understand at the same level as her siblings, but she knows that my back hurts and that I have to go to the doctor a lot. She enjoys getting her doctor kit out and "fixing me." I have to say...she's a pretty good doctor (although she likes to give a lot of shots!) We're determined to keep life as normal as possible for them (although cuddling and reading together times have increased by quite a bit!)
Brad and I are doing our best to stay on the positive side of things. We have a strong faith, we have a strong marriage, we have three wonderful kids, and we have all of you supporting us. We are blessed.
But, yes, it is hard. It's much harder than last time. The pain is an added dimension to everything I do. And it's really, really hard for Brad to watch me be in pain. We're finding a good balance of medication, but each day is different, and there really is no predicting pain-less days from pain-more days. It makes everything...from traveling in a vehicle, to helping with the kids, to eating... much more difficult. But we're working on it. Right now it's my Oncologist's number one priority. And I try to enjoy the heck out of the pain-less days (or pain-less mornings...they're usually the mornings.) :) It has definitely given me a deeper understanding of people who have to live with chronic pain. I have friends, family, past co-workers, etc. who LIVE with chronic pain every day. I want to (gently) hug you all.
The sudden onset of the symptoms took us a bit my surprise. It's difficult to go from a busy, busy mom to someone who has to sit in a chair a good portion of the day because of pain and exhaustion. So, the role-change thing has been a little bit on the mentally-hard side for me. Brad has completely stepped up, taking over many of the things that I did around the house. And Gene and Mary too. Blessed, blessed, blessed.
A huge thank-you, again, for everyone's love and support. We couldn't imagine going through this without you.
The Future: Looks Beautiful
Much love,
Noelle and family
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