Tim was supposed to write this almost a week ago but I can barely get him to sit down these days, much less write a blog between work & the traveling his coaching has required lately. Not to mention that his memory is like that of an 80 year-old, pretty much gone as soon as he thinks of it, hence why the dry cleaning is still at the cleaners 2 weeks later. :) Life should slow down a bit after the next two weeks so hopefully we can get back to a normal schedule of blogging.
Things got pretty out of control over the past few weeks to the point that we were both pretty worried about what would come next but we've been told that the first 6 weeks on the new drug seem to be the hardest so we're just settling down to ride out the storm of these next 2 1/2. There is only one other guy who is ahead of Tim in the trial so I've been really dependent upon the internet to see what is "normal" and what isn't with this since some European trials are further along at this point. It's really a strange feeling to not have a clue if a side-effect is something we should be concerned about or if its completely normal, not to mention with no one else really knowing that answer either. Luckily we are surrounded by a great team of doctors and nurses that we trust implicitly and have been incredibly willing to listen to our concerns and answer our questions as best they can. Essentially a lot of the information that we are giving them is helping to plan the course of others who may receive this treatment down the road.
I think the last time I wrote was about two weeks in, the fevers he had pretty much continued right up to him finishing the meds and he developed a pretty bad cough. It got to the point that they became so concerned about him having bronchitis or pneumonia that Tim got to go get a chest x-ray, luckily it was completely clear. He hasn't had a fever yet since he got off of the meds and his cough isn't nearly as severe. His feet got to the point of being so blistered that we went out and got him a pair of Nike running shoes he had to start wearing all the time and still was limping a lot. They have been fantastic though, the top is pretty much completely mesh so they breathe a lot but the bottoms are really cushioned which have helped to protect his feet. We've also found that blister band-aids are great for them and have been going through packs of those at a time. We've also bought him 2-3 pairs of the Dr. Scholl's gel inserts that we keep in the fridge so he can throw them into his shoes and help to keep the temperature of his feet down which helps with preventing the blisters from happening. They seem to have cleared up since he got off of the meds so we're hoping that lots of prevention will keep them from reoccurring. His hands also got pretty bad so I had to help him get dressed in the mornings since he couldn't button his dress shirts. The blisters calloused up and unfortunately that skin peeled off which has left very sensitive pink skin that I'm really nervous about being much more susceptible to becoming new blisters with this round. Luckily the pain of the blisters went away with his week off as well but we're quickly approaching the point where they began to show up last time.
All of this also came with the knowledge that he is no longer allowed to do yard work (too hot and too much friction on his hands & feet), he can't walk long distances (so now he has an excuse for driving in circles to find the closest spot), can't clean the house (can't be exposed to the cleaning products even though we use all natural stuff or the friction), can't wash dishes (he apparently took this to mean he can't put them in the dishwasher either, that situation was remedied quickly :)) and can't take out the trash (can't get the bag off of the can). We've accommodated all of these so far (many he really wasn't too devastated about not being able to do anymore, go figure...) and have just switched some of our roles which has been interesting to say the least. His biggest don't now is that he can't take hot showers and according to the little device he has that tells you if the water is the right temperature he basically has to take cold showers, he keeps cheating on this rule though as evidenced by the steamed mirror I see after every shower he takes, can't say I blame him for that one though.
We did go to Charleston last Friday for his one month check-in and were pretty much in and out as we went to Asheville on Saturday to do an early birthday celebration for me since Tim decided to abandon me for coaching in Florida on my actual birthday (sorry, just had to throw a little jab in there but no worries I'm going with our families to his favorite restaurant tonight for dinner as retribution. I'll be sure to send him pictures of my food to rub it in as well :)) The doctor allowed Tim to stay on full dose as long as he promised to report any fevers or side effects immediately so they could be taken care of. We're really hoping that this time is smoother than last so he can stay on the full dose but who knows what may happen. We didn't get any news about progress like we'd hoped but we are anxiously waiting to see when that news might come.
As for now Tim started on his 2nd dose last Friday and attempted to play softball (irregardless of the condition of his hands) on Monday until I killed that dream, like I said he is refusing to slow down much to my chagrin at times... We've started to see some of the same initial side effects creeping back in this week, his joints becoming sore so he walks like an old man, the loss of his voice, the rash that is creeping up his neck and down his chest and back so we're preparing for what's to come over the next 2 1/2 weeks. This time it is a little easier knowing that the week off will give him some reprieve from all of this but we don't know if the side effects will become cumulative like past drugs have been or if it will be successful. I think all of it will be much easier if we just know that there is good coming from it.
We do have one need if anyone could be of help, he is supposed to keep his hands moisturized with Udderly Smooth Udder Cream (preferably the extra care with Urea we've been told) and yes, unfortunately it has to be that exact brand and type. I think we've been in every Wal-Mart, K-Mart, Target, Walgreen's & CVS that we can find around here with no success, we can't even find the basic Udderly Smooth Udder Cream. Just wondering if we could ask all of you to keep your eye out for it locally & if you see it let us know where you've found it. Right now we've been ordering it off of the internet which wouldn't be a problem except Tim's memory keeps him from remembering he needs it until he actually really needs it so knowing where to get it locally would be great. Thanks in advance for your help!
Also, sorry for so much detail, I know this blog is a lot about keeping you guys informed but we've learned that it's also a great spot for us to come back & reference what he was experiencing at each stage and at times has helped us when we have a question about what happened when so it's become a bit of a journal for us as well. I mean if you think we can't keep up with this thing which we each have access to from our computers, cell phones & iPad, just imagine us trying to use actual pen & paper :)
Hope everyone has a great week!
