I'm Still Here

When I last left off we were headed to Maui. It was FANTASTIC to get away and leave doctors, needles, poison, more needles (you get the point) behind. I was able to completely forget about (well almost) chemo and desmoids. :-) It was a happy time.

We got back on Aug. 18th and went straight from the airport to the lab for blood work. I had chemo later that afternoon. Everything was okay with my counts so we were a go! This treatment would also mark the beginning of my higher dose (double that of what I was getting). I wasn't looking forward to it and with good reason. It was one of my toughest yet. I was jet lagged and sick and tired. So doing it on that day...probably not a great idea. The whole house sleep most of the day.

I have had a treatment every Tuesday since then. So if you are counting that is 5 in a row which, for me is pretty remarkable. It hasn't been without a few bumps. My white counts plummeted once again. I am on daily shots everyday that I can be to get them. It is a new regular for me. It is more of a nuisance that anything else. If only I could remember to do it! Ugh!! The germ patrol is in force over here and I am happy to report it has been business as usual.

The first few treatments were rough. I have had severe nausea and itching! I have a rash (allergic reaction?) in the general radiation area that itches like CRAZY! I am usually able to resist such reactions but I have been scratching like crazy and as a result, I have several open wounds. I know, that's bad but I have been kept awake because it itches so bad. Doctor's solution...take a benedryl...sigh! So then I become a drugged up mess. Nice, huh?

Last week I saw my doctor. I again begged him to show me the light at the end of the tunnel...is there even one there waiting for me?? The last time I asked I was so emotional and in tears telling him that I couldn't do this anymore. The price is too high for me. The nausea is horrible! I got a bit more empathy this time so he agreed to go ahead with our original plan...somewhat. He said that I could take 1 week off for every 4 weeks served...uh, I mean of treatment! So that means 4 treatments on and 1 treatment off. I even get to chose when we start. I have been studying the calendar for when the holidays will fall. That is probably what will guide me. I want to be well for the holidays.

I still feel like I am guiding my treatment when these types of things happen but I guess we have to wait and see what it will mean for me. I have been "stable" since I've started treatments, meaning all of my scans show no tumor growth. There has been no shrinkage but that might not ever happen. Stable is the next best thing for patients with desmoids. I do have limitations of movement due to the location of the tumors but I have learned to compensate for it. I don't like it but I don't really have any say in the matter! That sucks!

I will schedule my next CT scan within the next week or so and go back to see if the new higher doses have made a change in tumor size. After my last CT in July, he decided to up the doses gradually and we have been at the target dose for 5 treatments. At this point in my treatment I don't expect anything. Stable or smaller will be the best news. We pray for that!

I continue to have incredible support from many folks I just didn't know cared so much. I continue to receive meals every week from a lot of the same people (thank you guys) and many new people wanting to help. I feel very fortunate that everyone has jumped into help with meals and the kids and without all of you we truly would not be handling this as well. We hurt, we worry, we grieve, we cry but we don't give up!

Thank you all for your continued support.