My oh my what a long week. The anxiety from the impending scans hit the Lunsford household a week ago. We were on pins and needles waiting to get to Florida to see how the cancer has been behaving since February, and since getting into the clinical trial. Bennie hasn't had any scans in over 12 weeks (which is a century for a cancer patient) and we were ready to take a peak inside to see what was going on!!
We left for Florida on Wednesday evening this time, because we had to be at Moffitt bright and early on Thursday morning for CT scans of body and MRI of the brain. All the scans were done around noon, and so it was time for us to wait a couple of hours before meeting with the Dr. to get the news. Bennie has to fast for the CT scans so he hadn't eaten since we woke up, so we ran to a pizza eatery for lunch. Bennie was pretty hungry, but I couldn't even get down a couple of bites because I was so nervous I wanted to puke everywhere. It's pretty much like someone announcing the lottery and you have all the numbers, but then they say "And the winning number is..............(drumroll goes on for two hours)", and you are waiting for two hours for the winning number. You can cut the tension with a really dull knife.
They put us in a room, and literally all you hear is tick tock, tick tock, tick tock from the darn clock for 30 minutes until someone finally walks in!!! Thank goodness already give us the news!!!! But its not the Dr. its some guy who wants to enroll Bennie in a trial to basically use leftover blood and whatnot that they have already taken for other research purposes. Fine, whatever, give us the consent forms and go get our Dr.!!!!! Another day or two passes (15 minutes maybe), and finally the Nurse practitioner walks in. She says everything LOOKS GOOD!!!!!!!! Nothing new was found on the brain MRI, and CT Scans are good enough to keep on keeping on in the trial!!!!
As I am trying to catch my breath from not breathing for an hour or so..... complete exhaustion takes over. After you get good news like that you literally feel every tense feeling finally relax and you can breathe from relief. Months go by and you are anxious about treatment, and finally you get news that can get you by the next few weeks. It suddenly feels like we can plan more than one day at a time. We can maybe make plans for 3 to 4 weeks out!! Obviously side effects can pop up at anytime, but the good part is we know at least for the next couple of weeks he won't be in the hospital for a brain tumor or something like that. You automatically just want to sleep and eat, because it's something that hasn't been done for a couple of weeks leading up to this stressful day!!!!
We head towards the infusion center after getting the AMAZING NEWS!!!! The infusions only last an hour and a half now that he is only getting Nivolumab (Anti pd1). He is now getting an increased dose of the nivolumab at 3 mg instead of 1 mg. After the infusion we celebrate with the small amount of energy we have by stopping to get dinner on the way back to our hotel room. We actually stayed in a different hotel this time, because we were trying to rack up points with Southwest Airlines. This hotel had a deal where you get 5000 points if you stay there so we jumped on it! It is right on Tampa Bay and looks over the water. We got back to our hotel, and to our amazement dolphins were jumping all over the bay. There must have been 10 dolphins right outside our balcony. It was pretty neat.
We walked down to the pier to get a closer look, and I had a very surreal moment. I was watching these dolphins jump and play in the prettiest sunset, this live band at a restaurant behind us was playing the song "Every little thing is gonna be alright", and it was storming behind the hotel. It just made me sit and think that there are going to be beautiful times in our life, even when a storm is brewing all around us. Even with this cancer journey encircling us at all times, we still have beautiful moments all throughout it. Everything is gonna be alright even if the storm comes upon us, and the sun goes down. All in all it was an awesome day, but then Bennie started to feel a little feverish like he does most nights after infusions. After some Motrin, and a good nights sleep he felt better in the morning!!! Thank you for all your prayers..... we couldn't go this alone..... and we thank God everyday that we don't have to. We also are so thankful for all the beautiful moments that we get during this crappy cancer storm. Because some people in this same storm don't get as many beautiful moments as we have been blessed with.
On Wednesday we learned that our good friend we have known since highschool at church, who also started this cancer journey the same time that Bennie did, is having his hardest time with melanoma. Bennie and Matt where hospital room neighbors at MD Anderson when they were both admitted for their two week stent for treatments last January. Bennie was able to talk with him and give him some encouragement, as he is in the hospital fighting for his life. He may come home soon and will go on hospice to help with the pain he has been having, and to support him since he cannot have any more treatments in the current state he is in. It's really hard for us, because he has been through this battle since the beginning with us, and we simply cannot imagine him not being here for the rest of it. It's not fair that we get good news and he gets bad news. However, we do trust that God is working through his life just as he is working through ours. We know Matt has a strong faith, and we are praying for him and his next steps in this journey. Please pray for peace and comfort for him and his entire family, and it's never too late to pray for a miracle.
Praise God for great news!! What you said about there is beauty in the middle of storms brought tears to my eyes, it is so true!! Thank you for sharing!!
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