The Roids Are All The Rage

Good Morning!

Chad is almost a full week out from infusion and doing well. The side effects during this infusion were much better than the previous one. I've been tracking symptoms and looking for patterns and it appears that the steroid has made a big difference while he's on it. He is given the Decadron through IV at the hospital before he starts the infusion then he continues it by tablet at home for the next 3 days. The steroid did exactly what it was supposed to do, his nausea and appetite were much better and his energy level was much higher. The main takeaway from the observation was that once Chad gets disconnected from the pump he starts to feel cruddy. The first 24-48 hours after the chemotherapy infusion is complete seem to be when the side effects are the worst for Chad. Our deduction is that he rides that steroid wave for the first few days and then suffers the crash as the medication leaves his system. Fatigue, nausea and mood changes are heightened during that time. Those days are rough and it stinks to watch him go through it but honestly, it was worse for him before the steroid so at least the toughest of his times have been shortened. I'll keep working to find ways to offer him relief during those days, so far I've discovered the Medicine Ball at Starbucks, peppermints and diffusing certain essential oils have all been helpful. 

Chad's weight held up a little better this time around. He did lose a handful of pounds last week but it was half the amount that he lost last time and I am pleased. He only had one day that I really had to push him to eat and the difference on the scale is obvious. He has eaten pretty well. He's had some varieties of pizza recently but he needs to be very careful with the dough, even the standard hand tossed dough can be too thick but we found two places so far that have extra thin crust that he liked and had no problems with later. Chad asked for golumpki (cabbage rolls) as soon as his stent went in and I've been nervous about the cabbage & onions and not sure if we should chance it. He has done very well with other foods that I was nervous about so I figured that I should give him what he wants and I made them last night. I took my time and deveined the heck out of that cabbage before I rolled it and I figured out that I could still add the sauteed onions to the filling for flavor and let it sit for a few hours then I picked most of them back out as I rolled. He was thrilled and really enjoyed his dinner so the extra steps were worth it. 

We ventured out a little further than we have so far socially over the weekend and it was nice. Chad felt well enough to attend a graduation party for a few hours and he really enjoyed seeing so many people. (I did too!) There were some fantastic hugs given and a lot of always appreciated laughter. While it was great to get out and visit we also learned some lessons about how to do that better next time. When we got home I immediately made a list of what comfort and food items that we should have with us at all times when we go places. I wanted him to feel like everyone else at the party and not have "special" items but that was not the right move. He did okay but with his food restrictions it was a struggle and I realized that it's okay to bring "special" items, he is special and I want him to be as comfortable as possible at all times. Chad drove us to the party and did well for awhile but suddenly felt ill and we had to depart quickly and this is where our other lesson was learned, I need to get more comfortable driving Chad's truck! I know, I know, it's just a truck and it shouldn't be a big deal but for me, big truck=big deal! Rosalita (that's the truck) intimidates me. I've driven her a few times before but I also had the cold, anxiety induced trickle of sweat down my back every single time. There's no doubt that I will always get behind the wheel if I'm needed but I shouldn't be so nervous if I have to take his keys. I will practice so if you see me white-knuckling the steering wheel of that truck around town and I don't wave don't take it personally, I have to focus. ;) 

Chad and I continue to thank all of you for your kindness, concern and generosity. We've always known that we had great family and friends but to actually see and feel the enormous amount of love that is out there for us has been indescribable. We are both amazed everyday by the thoughtfulness and consideration you've all shown. Chad has been really adamant about "not shaking anyone down" and doesn't want people to feel like they need to give him gifts but he's also been really appreciative of everything you have sent him and the ways that you've offered assistance. Accepting help is awkward for us and the thought of asking for it is downright unbearable but we thank you for sending us your help without being asked. We have realized that family and friends really do want to help us, and even if we tell them that we don't need anything they find a way to help us anyway so we've decided to just let you help us and to say thank you for wanting to do it.

We know that the travel and experiences that we are hoping to do is definitely going to be above our means but we are willing to do without certain things to make that happen and we are okay with it because making memories is the most important thing to both of us right now. Some of you have offered us your airline and hotel points, to stay in your vacation homes and cabins, some of you have flat out offered us cash to travel and we are indebted to all of you for your gratuity. We will enthusiastically accept all help for travel and experiences and that includes advice and tips based on your travel experiences to places that we plan to go. The calendar tab on this website is a good place to ask for your ideas. I will make an entry for each place/event that we are hoping to go/do and if you have a personal connection or inside information to any of them please comment there or send us a private message. I will also finally open the donation tab as requested by a few of you that are not local and in anticipation of a future travel fundraiser. Please do not feel pressure to use the donation tab, so many of you have given us so much already, we just want to make it easier for the few of you that really want to get involved in this manner.

With all sincerity, we love you and thank you all.