Playing The Waiting Game

Happy Friday Family & Friends!

Chad received his 13th chemotherapy infusion this week. A change was made to his regimen and he didn't receive the full FOLFOX this time around. The neuropathy that Chad has been experiencing did not improve and in fact worsened in some ways. Previously the cold sensitivity was most bothersome during and immediately after his infusions but recently it has stayed beyond that and did not go away at all after the previous infusion. The numbness in his feet also dd not improve like we hoped that it would so it was decided to remove the oxaliplatin from his treatment plan. There is a fear that permanent nerve damage could result from prolonged use of oxaliplatin and since Chad has been on it for 7 months and is experiencing heightened side effects it is in his best interest to discontinue it's use. We will see the oncologist in 10 days and discuss the new treatment plan. We are not sure if Chad is just on a break from oxaliplatin or if it is a permanent stoppage but we'll know more soon. Chad did receive his fluorouracil through his pump at home as usual. 

Chad's weight is still holding steady and we are very thankful for that. He is able to eat very small meals, less than child size portions, when his appetite allows and we've accepted that he has likely reached his maximum portion size. He has reluctantly complied with my many requests to supplement his nutrition with meal replacement shakes and smoothies a few times a week so I consider this a small victory. Food is just not his friend so I have to mention that while we both appreciate the thoughtfulness behind the gifts of food, he really can't eat most of it. Please accept our apologies and we hope that you understand but we feel just awful when family and friends go through the trouble of making him these delicious meals that he can't enjoy. We wish that he could, but he simply cannot. I have been able to freeze some things though so that's good. You are all awesome and we appreciate you, please know that, we just have a unique situation.

I still can't tell if there has been any improvement since being on the sucralfate but am hoping that the next set of scans will show that it's helped. He is still having a lot of nausea spells and is sleeping a lot but that seems to be his new normal. I am seeing a bit of a decline in him and it's breaking my heart. I am glad that he is able to still go in to work a few days a week and enjoy some fun activities but there is a marked difference in what that looks like for him in comparison to when his illness began. When all things are considered, yes, he is doing okay. But is he doing as okay as he was 5 months ago? Sadly, the answer is no, no he is not. It's my job to observe, track and make notes so I notice things that even he doesn't sometimes and folks, it's extremely difficult to watch so closely but not be able to do anything but write it down. We are in a holding pattern right now, waiting to see if the sucralfate is working. Waiting to see if his neuropathy improves. Waiting to find out what his next treatment plan will be. Waiting to see if the growth that was on the last scans has stalled. And let me tell you, waiting stinks! Thankfully, Chad is nothing short of amazing and possibly the most positive person on the planet and his attitude is infectious. He always says "you can't make an omelet without cracking some eggs" and I remind myself of that when I start to get impatient and frustrated. I am thankful for everyday with him, whether he's having a good day or a not so good day, they all count and they are all cherished. We are still laughing a lot and finding joy in the journey but cancer is heart-rending, even for the most positive people, cancer is still cruel. 

Thank you all for sticking by us. We both send you all love and light and sincere gratitude for all that you continue to do to help us every single day. Thank you in advance for your ongoing prayers, positive vibes and good juju. We wouldn't be this far without it. We love you all!