A long overdue update

Hey everybody,

I feel like I always start this thing with a "sorry", but I really am sorry there's been such a delay since my last post. I have thought about posting many times - finding the physical and intellectual energy to get it done is another story.

Here's the latest:

I've made it through 7 treatments, which means only 1 more to go! The last three treatments have been with a new chemo drug, which means getting used to a whole new set of side effects both at treatment and after treatment. The struggles have come down to two things:

1. At treatment, I have struggled with having an allergic reaction to the medicine as they give it to me. Everyone says this isn't uncommon, but it's a little disconcerting to know that the drug they are giving you to make you better can also throw you into anaphylactic shock. Fortunately, my reaction hasn't been that severe yet - some tightness in my throat and chest and instantaneous back pain. Unfortunately, the reaction has gotten worse each time. Want to see three nurses come running? Hit the call light after two previous reactions. This past Wednesday they didn't even bother to close the door to my room. They just all went out to the station (about 10 feet from my room) and stared at the door until I hit the light. These ladies are taking SUCH good care of me. They had my pumped full of drugs in no time, and I was feeling better in just a couple minutes. I am really thankful we only have to do this one more time...

2. Once treatment is done, my big struggle has been pain. Pain everywhere. Some call it muscle pain, others call it bone pain - I call it pain. This seems to kick in around day 3, and not let up until day 6 or 7 following treatment. I've tried a little of everything to help get rid of it - walking, spending lots of time stretching and using a foam roller to massage sore muscles, and drugs - from the over the counter stuff all the way up to narcotics.

What the doc has found to be the solution to both problems is steroids. At treatment, I received 2 doses of IV steroids. At home, I take oral steroids the day before treatment, and for the next 4-5 days after treatment. The upside is they do their job - really well. Any allergic reaction I have at treatment is almost immediately gone, and the pain in the days following treatment is kept to a minimum. The downside is I really struggle to sleep - I mean really. The night before treatment #6 I saw every hour on the clock. I got a couple nice 30-minute naps, but that was about it. The upside/downside (I'm not sure which one to consider it) is it gives me a good bit of artificial energy. I cleaned my house like a wild woman after the last treatment, and then called other people and asked if I could come over and clean their houses too! I went for a really fast walk with Mike, and he told me I might have a future on the Russian Olympic team. :) It gave me energy to enjoy the weekend with my sister-in-law, Jenny, who was visiting from California a couple weekends ago. But when I stopped taking the steroids on Monday, the crash-and-burn set in. Apparently once your body gets those steroids, it's not too happy about giving them up. So, the next 5-7 days have been filled with fatigue, body aches, and lots of naps and "couch time".

If you're doing the math there, this all adds up to about 2 weeks. I've finally gotten to the point where there doesn't seem to be much a of a reprieve between treatments. So, I'm being even more guarded about my time, saving my energy for the important stuff, and taking it easy the rest of the time. The 20-minute power naps have been traded in for 2 hour naps in the afternoon. The emotional and intellectual fatigue are growing too. I'm thinking about making a sign that I can hold up anytime someone asks me a question. It would read something like this: "I don't know/I don't care - and that's not because I don't really know or don't truly care, or don't love you bunches, it's because the idea of thinking hard enough to come up with an answer makes me want to a) cry, or b) take a nap.  You are welcome to make any and all decisions for me, and if I argue with you about this later, please refer me back to this sign." What do you think??? In all seriousness, it has been tough transition for all of us at times. Mommy's multitasking days are on hold, and sometimes one task is pretty overwhelming, which doesn't always make sense to three kids who are used to seeing you talk on the phone, make dinner, and break up fights all at the same time. I have always been the "steady Eddie" in our household, but these days I am much more emotional - and from my perspective, it feels like I never know what emotion I'm going to get - they just show up and take over. The whole experience feels a little "out of body" at times - I know that how I'm feeling is temporary and not really "me", but I don't seem to have much control over it.

So while the journey is far from over, I am looking forward to this chemo portion of the journey being finished. Everyone is forewarning me that it's going to take awhile for the drugs to get out of my system, but any movement back in the "normal" direction sounds great to me!

We've also got a date set for surgery: Thursday, August 25th at 7 am. This will technically be outpatient surgery, but it is very likely that I will spend the night and be released very early the next morning (as long as you stay in the hospital under 23 hours it is still considered an outpatient surgery). So, that means I will have a 5-week break between the end of chemo and surgery day. I'm so thankful for the timing of this break: we are hoping that I will have some energy so that we can get away as a family for a long weekend "mini-vacation", and it will also give me a couple weeks of "normalcy" as we start up the school year in mid-August.

So, the traveling these days feels slower, quieter...tougher. But we're hanging in. We are super thankful that even though we may not be walking this road perfectly, we have seen God be consistent and faithful to us again and again. We have been blessed by the kind words of so many - people we know, and plenty we don't - who are praying for us. We have been overwhelmed by so many who have provided meals, helped with the kids, taken care of things around the house. So for now, we keep on journeying.

Love,
Stephanie and the gang