It has been a long time since I have posted an update. Things have been a little busy. Kevin’s post-surgery recovery was full of ups and downs. There were good days and bad days and some days that were a mixed bag of good and bad. We did have a wonderful holiday and spent quality time with our family and friends. Have you ever heard someone say, “I never realized just how blessed I was until (fill-in-the-blank with customized life-altering event)”? This is us now…every single day. We are tired, scared, nervous, challenged, consumed with worry, but above all we are loved and we are blessed.
Kevin was hoping the removal of the tumor from his right sinus cavity that has been blocking his airway for the last year would allow him the freedom to breathe freely. What is the saying about best laid plans of mice and men? That’s right! They often go awry. The surgery required a great deal of destruction on the tumor side, which lead to considerable annihilation on the healthy side to harvest tissue to patch things up on the tumor side. All this tumor excavation, cancer mining in the bones, sinus demolition, healthy tissue excising and transplanting left him with double the sinus fun. Subsequently, he was left with the inability to breathe out of either side.
Nights have been especially challenging. He has acquired a plethora of medical salves, sprays, pills, and potions to address the airway issues. There has been an influx of medical devices that have been employed to assist in the oxygen exchange. He has a cool mist humidifier, which is sort of like falling asleep in a rain forest or in front row seating at a burlesque show—depending on if he sets it on high mist or low mist. The SinuGator® has also been added to the menagerie. If you do not know what a SinuGator® is or what it does or what it can produce from depths of one’s sinuses, fall on your knees and thank God for sparing you from having intimate knowledge of this device or its function.
We are calling Houston home for the next six or seven weeks. We settled into a comfortable apartment just minutes from MD Anderson and the Proton Center, where he will be receiving treatments. Shortly before we left on our journey to our new homestead, we learned of another man from our community waging his own battle against the bastardly disease. We were told he was also seeking treatment at MD Anderson and he and his precious wife were going to be there the same time as we were. God immediately spoke to our hearts. We have only been able to get Kevin the care and treatment at MD Anderson by the selfless generosity of our family, our tribe, and our community and now we have an opportunity to share the blessings we have received. We invited them to share our living space in Houston and they graciously accepted. We have embarked on this journey with new friends by our side. We have established our own little cancer commune and we laugh and we cry and sometimes we ask why. We don’t have any answers, but we have each other and it is truly a beautiful side effect of this ugly disease. I will not include any information of their journey in my posts. It is not my story to tell. I will tell you that we are stronger together and your gifts have gone further than you even know!
Kevin was supposed to start his radiation treatment early last week. There were some last minute changes in his treatment plan (and by changes I mean they totally scrapped the old plan and made a whole new one). They changed the type of radiation, which changed the mapping and calculations and long-story short, he started radiation on Thursday. He has to be bolted to the table with a molded mesh mask and a protective mouth guard in place, which makes it very hard to believe. In the middle of his very first treatment the machine threw a rod or blew a head gasket or reached meltdown mode and powered down. So, he had to wait for the Radiation X-Men Repair Patrol to fix the machine and start again. Friday he managed not to break the machine. We are considering Friday a WIN.
We met with the Radiology Oncologist in length Thursday evening. His message was very informative and in a nutshell he spent 45 minutes detailing how badly this is going to SUCK. The “radiation Splash” is the good stuff that the radiation splashes while obliterating the cancer. In Kevin’s case, this may include, but is not limited to: his optic never, his hearing nerve, the roof of his mouth, the saliva glands, his smell, his taste, his ability to swallow, his teeth, and it will progressively leave him physically fatigued. The biggest challenge in the next few months is nutrition and weight maintenance. If he loses more than 5% of his body weight he will have to have a feeding tube. The doctor’s order was specific: “You mouth is going to hurt, your throat and esophagus will be burned, food will taste like shit and you will be so exhausted you will physically not feel like eating, but YOU HAVE TO EAT. You will probably not be able eat solid food in a few weeks. You are going to have to pound BOOST like a frat boy during rush.”
The surgical pathology report wasn’t exactly what we had anticipated. There were cancer cells where we didn’t want them to be and the final grade of this tumor was a lot higher than we thought going into all of this. Sometimes, this bump in the road seems like a mountain. Sometimes, watching Kevin digesting what the next couple of months hold for him takes all of the air out of my lungs. I have to remind myself to breathe and focus on the end game—restoring Kevin’s health! I am buoyed by an anchor or love, prayers, support, encouragement, and HOPE! Thank you for being our anchor.
PS- here is a video of two ladies fighting at a bus stop in Houston. 😂