Still plugging away….

by Karen on September 7, 2016

in Steve's Cancer Updates

I just wanted to post an update since I haven’t in a while.   I realize some people are afraid to ask, but seriously you can always ask us how Steve is doing.  We don’t mind talking about it.  It’s our life now.

The girls went to camp the last week of August, right before school started.  It was a camp that is only for children who’s parents have battled cancer/ have cancer.  It’s called Camp Kesem and it’s a free one week overnight camp. When we first heard of it, I immediately thought how great it would be for the girls to meet other children who have a life like theirs and to hear their stories.  But I figured they would NEVER go away for a week.  But they both surprised me and they were pretty excited about it and wanted to go.  So they did!

It was an AMAZING week for all of us.  The girls had SO MUCH fun!  I dropped them off on Sunday and picked them up on Friday.  We had no contact with them all week, but the camp did post a lot of pictures for us to see each day.  That helped so much otherwise I’m not sure I could have done it.  I needed to know they were okay and having fun.

You can see the pictures here (warning, there are over 3000 pictures and not all of our girls) –> https://www.flickr.com/photos/[email protected]

Not only did they have the best time ever (they can’t wait to go back again next summer) but Steve and I had a nice time together.  It was weird without them but we took advantage of the time, and had a great week.  But I missed them terribly!

So Steve is doing pretty good.  He has a constant cough that really takes a lot out of him.  We aren’t exactly sure what causes it but it seems to be worse with humidity.  The problem with the cough is it totally exhausts him when he has a big coughing fit.  He uses an inhaler to help at times, but it doesn’t stop it.  It comes and goes, thankfully.

He has occasionally back pain but has pain meds to help with that.  It doesn’t always work as well as he’d like it too, but it doesn’t stop him from doing anything.

Yes, he’s still working!  We’ve actually been talking about that more lately and we both agree that he’ll continue working for as long as he can or as long as HE wants too.  I’m behind him no matter what he chooses.  His work is also amazing and they make it very easy for him to work and will probably continue as long as they can.

The side effects from the chemo haven’t been too bad.  He has been getting a mouth sore after every treatment, but they haven’t been too bad and he tries to stay on top of them so they don’t get as bad as they were before.  The treatments really exhaust him and he sleeps most of the weekends so company on chemo weekends doesn’t really work anymore.  But the off weekends are perfect!

Steve’s actually been spending time with some of his childhood friends on his off chemo weekends and it’s been great for him (and them!).  He has 4 more chemo treatments and plans for each of those off weekends.  This coming weekend he’s spending it with his 3 (AWESOME) college buddies, 2 weeks after that our AWESOME neighbors are having a fundraiser for us (you can read about it here –> https://www.facebook.com/events/532399610304136/), and then 2 weeks after that we have a family wedding.  My AWESOME cousin Danielle is getting married and she’s SO HAPPY Steve will be there!  That was something we didn’t know would happen and we are all so happy about it (not her wedding, but Steve being there).  She’s known him since she was about Allison’s age so he’s pretty much always been in her life so it means a lot to her.  (Sorry Danielle if this makes you cry!).

How is the Chemo working?  Well, it’s working good enough that he’s still getting it.  His CEA was 47 when he began and it’s up to 53 right now.  It’s not a huge jump so the doctor is letting him continue.  He will do scans and CEA again in 3 weeks and see what everything looks like inside and then decide if he’ll get his last few treatments.   So this current chemo seems to be keeping things from moving along too fast, but not getting rid of any of the tumors.

After he’s done with the treatment he’s on right now, he will take an oral chemo pill but the doctor has already told us that he hasn’t had much luck with it.  Dana Faber Cancer Institute told us the same thing, but it’s worth trying.  The bonus is there are no real side effects of that drug.  But if it keeps the tumors from spreading for even just 2 months, we’ll take it.  That will get us through the holidays and that’s something we’d really like to have.

We have another family vacation planned for November and the girls know about it.  They are excited for it, but they also don’t want to rush the time because they know that means daddy is pretty much done with chemo so they don’t want that to come very fast.

That’s the latest and I’ll be sure to update you all once we get the results from the next scans later this month.  Thanks again for all your calls, texts, emails, prayers, best wishes and love!

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