Day One

 

Remember that time you went to go buy that new car or house, or invest in a beautiful new backyard pool. It's all in the negotiating, what the terms are, and promises are made to you about what all you will  receive in this process. You're hopeful, of course, and it all sounds good. Sign here. You do. Then things start developing, I'll just say that loopholes arise, extra money is all of a sudden required, and the deal isn't quite as sweet as it sounded. This is no surprise whatsoever. You knew something was going to pop up, but you just didn't know when or what it might actually be. I've discovered on Day One that cancer treatment is universally similar. Nobody wants to tell you 'everything' beforehand. Don't get me wrong, you are told much of the information beforehand, wait, a lot of information beforehand, but it's the blanks that get filled in later that really bring it all together. Unfortunately, cancer treatment isn't something you really want to pass up, negotiate, or pick a cheap option. Do it right the first time, and your odds are greatly improved, which is why we are at MD Anderson. Dr Pahlavan was exceptional in guiding us towards a "first time" chance is your best chance philosophy. There's not been a doctor here at MDA that doesn't agree with that. Get it right the first time so you don't have to do this again. Or at least try to, as there's never a guarantee. 

Wait, where was I

Back out of the rabbit hole I climb, and what Day One showed both David and I is that you can't really get all the intimate details of radiation and chemo until you actually sign up for the show - anywhere, MDA included. They don't have time to talk details if your not seeking treatment here 'for sure". But once your signed up and show up, you are officially on the ride. Welcome to cancer island. It's where the people who are in the thick of it are. The boat ride here was okay, but now the people around you are your people. Your face is their face, and everyone is there together. Then, and only then, does the bonanza of information arrive. The high level information initially given is great, but now, it's the real deal. Time to get down and dirty, and talk about what it's all about. And MDA does this masterfully. They don't miss a beat. 

Ready, Set, Go

Although I can't speak directly for David, I can spin what I interrupt from him, from watching his day(s), being here while he experiences it, and listen to all his words and attempt to bring them to pen and paper. So here goes. Day One was jam packed with appointments, as well as his first radiation treatment. 

But first, this may help review all of his sinus cavities that will feel the effects of radiation: 

Last first please 

I’ll begin with his last appointment of his first day. That’s where his treatment plan was reviewed in detail, with all other appointments Day One leading up to that big moment (yet all appointments of the day had a large contribution!). At his final appointment on Day One, his radiation oncologist explained to David that all his sinuses would have radiation. All of them. Above his eyes, to the sides of his eyes, under his eyes and checks all the way down to the top palate of his mouth. I was fortunate enough to be listening in on this particular conversation because David had me on a conf call during this crucial visit with important information being dispersed - particularly what the expectations are for David.               * no family is allowed in MDA at this time for appointments. 

 I was intrigued at how the health care team decides what all they decide. I mean, after all, at these appointments you will typically see 2 nurses, one PA, a fellow and then drum roll, the amazing doctor. Actually, they are all amazing. I digress. Dr Rosenthal (radiation oncologist) told David that they will also be radiating his lymph nodes in his neck as well. I know that David and I both took in a ginormous breathe of air (in our separate locations) when those words were spoken. What? Somehow in all the appointments prior we had missed this information. It makes perfect sense, as that's where the cancer would likely travel and spread. It’s common knowledge. Yet, still surprised over here because the side effects for radiation to that area adds many layers to what’s already about to happen. So, without missing a beat, Dr R stamps the plan in permanent marker and so it is written. Now we all know what’s about to go down in complete detail. At this point (since I’m starting with last appointment first) the radiation treatment #1 is already completed earlier in the day, so we begin putting all the pieces of the puzzle together. We are new at this, with so much to learn. Trying over here. 

The better to see you with

The 9 am ophthalmology appt was a unintended 2 hour appt that ran so long, it pushed all the other appts for the day behind. Eyes are important so no one is complaining, just noting it. The ophthalmologist and 22 people who assist with your visit there do all the things required to check all-things-eye related by running tests and gathering the baseline and information needed. Since the radiation David has is so close to his eyes that special care is needed to protect them. He has very detailed instructions for his eyes: eye drops 3 times during the day every day no mater what, and eye gel in both eyes every night no matter what. Okay, can do. There is never an exception to this. This must be completed to keep your eyes moist and operational. The word ‘moist’ turns out to be the keyword for this day and I imagine all days to come. Just keep everything from neck up......moist. 

Teeth are always in style

Now, David's off to the next appt with the oral oncologist (dentist) who proceeds to check his mouth, teeth and gums. It's during this appointment that David is presented with his final mouthpiece for radiation. Taa Dah!

What's unique about this mouthpiece is that is keeps his mouth open, pushes his tongue down to cover his salivary glands while he lies still for the radiation - and learns to swallow with his mouth open. They gave him exercises to practice what it's like to swallow with your mouth open. This “mouth department" (just like the “eye department “ doing their part) will try to protect David's teeth, mucous membranes in his mouth and his salivary glands. If the salivary glands get zapped too much, no spit for you. What we also learned is fluoride is the answer to every question. From today on and for the rest of your life, fluoride is your bestie. Fluoride trays, fluoride toothpaste (for at least 3 minutes each brushing) and flossing are of the upmost importance to keep your teeth intact. David's like a hot potato in his seat at this point because while all this is being reviewed and a bag the size of your grandma's purse is being handed to him with lots of product he'll need, of all things the Radiation Dept is calling him on the phone asking him where he is. The appointments thus far have been running so far behind, and he's trying to get there. Granted all these appointments are in one building, which is amazing in itself. That's one of the many things that's wonderful at MDA - is that all appointments are coordinated by them, and all appointments (usually) are in one very large, huge, gigantic building with an elevator system that surpasses any 7th grade math you've tried to figure out lately. 

Radiate on this

The time has arrived, and with his mouthpiece in hand and racing to the Radiation Dept after hunting for elevator G, he's arrived. 

Okay, change your clothes, put your mouthpiece in, here's your mask, put it on.......

He's now realized that when the technician put the mask on him, he was in mid blink with his left eye. Now with his mask on, his right eye is open, but the left eye is wonky, half open and half shut with his eye lashes caught in the mask. David has about 1 second to think about it as the instructions come his way. "Okay, now pick a spot on the ceiling and keep your eyes on it. Stay still. Don't swallow. Okay, swallow now. Push your tongue up. Push your tongue down. Be still". He is trying to be obedient so not to blind himself or die from the saliva collecting in his mouth. As he's busy trying not to drown in his saliva, figuring out how to stare straight ahead with one eye half shut, he realizes what seems like forever is about 15 minutes. After it's all said and done, the technician reminds him that "next time, maybe he can try not to stare so hard". They encourage David to gaze more gently at the selected point on the ceiling. I have a feeling he will continue to get constructive correction as time goes on and they try day-in and-day-out to radiate the same place each time. Day One radiation completed. Whew.

Where’s the finish line for this leg of the race

As the race continues to make other appointments, he's now missed his audiologist appointment completely. That one will have to be rescheduled another day. Okay then, onto the Yoga Study Program Dept for his 6 minute walk. Now, you do not have to go outside for this required walk as they have taped the floor nicely so that each participant follows the lines and arrows. The facilitator will determine how far you've walked, and because they need you to hurry up after the 6 minute walk and collect your vital signs real quick, you don't really know how far you walked in that 6 minutes. Part of this whole study has only patients performing the walk and vital signs afterward, as the caregivers do not. So far, we both each have completed 2 surveys online though - all a part of finding out what is happening inside people's heads as they move through the cancer maze. Ex: How stressed are you, how are you sleeping, yada yada yada and I know it's important to the study, so we do marinate on the answers to help give an accurate account. Alrighty, David has completed the required walk and we will be assigned to a group soon, I'm thinking. I wonder when the yoga starts.

I see the Finish Line

The finale of Day One was the appointment I mentioned at the beginning of this post. It was his final appt of the day and a discussion with the radiation oncologist was enlightening. This is where all the details were delivered. Every detail you want to hear and many you would rather not hear but need to hear. You've signed on the dotted line and now here's what you'll get. The “2-3 week timeframe” during treatment that you'll feel good morphed into “hurry up and eat all the things you want to taste - by next week". Oh, okay. Because the new news is by about the end of Week One (which happens to be David's birthday on 1/19) he'll not be tasting that birthday cake, he's told. He’s told he might need to stay home as nose bleeds are in the cards with a myriad of other unpleasant tortures coming his way. Good news? Recommendations for readily given for keeping his nose moist, sinus rinsing, using aquaphor in his nose, along with nose gel and any other way you can keep your nasal passages moist is optimal. Your sinus will be zapped to the end of the earth and back. Moisture is key. Your upper mouth palate will be sore, your salivary glands will cease to create that saliva you were once drowning in. And then the final ball of the day drops : eat what you want to taste by this weekend. No guarantees after that. Chemo starts tomorrow as well, and the nausea will be knocking at your door just as you're trying to keep everything moist. Oh dear Gaud. Welcome to cancer island. 

What the what

When David walked through the door after this most exciting Day One, he needed to sit down and process what just happened. Just like you do after you get off that rollercoaster, it's the pan in the face feeling and about the same time you say "just give me a minute". Very similar to when someone asks you "Are you okay" and the answer is "I don't know.". 

We visited about each other's day, but really it was more like a pouring of alien information into our lives. We knew at that moment (because of the thousand things and instructions they told him to do ALL starting today) that we needed to get organized about it - and start today, as instructed. 

We decided to categorize the process by body systems and keep track of what he's to do for each of the affected areas. If changes or additions need to be made, we can adapt and change the instructions as they happen. We decided having reminders on the mirror was the best option for us. It's time to get serious and get a jump start on moisture and self care. The Home Edit book is coming in handy - even here in Houston.

Apartment Sweet Apartment 

Our apartment is only about a mile or so from MDA. It's a 2 bedroom, 2 bathroom that is a corporate apartment that can be rented for your determined amount of time. We expect to be here until the end of Feb. Now, that could always change as the only thing constant around here is change. And that's okay.

We have everything we need here and are blessed beyond belief. As we call Day One done and thank the good Lord for all these blessings, we will await Day Two and see what that will look like. It's truly a day-by-day endeavor. David and I have set our intentions to use this time to learn and grow. Since we do not necessarily know what is really going to happen and how good or bad it will be, we smile and take each day as it's given. We have also set our intention to use this time to strengthen our own relationship. If the goal is to rid David of cancer and add time to his life, we both feel like nurturing each other in our own relationship is logical. For now, it's time to lay our heads down, say a quiet prayer and just be. We fight the urge to get lost in our minds and stay rooted in our being. We try, and that's the best we can do. Our best each day will be varying and different and acceptance of what "best" is each day is what it's all about. I've got that memo written already. Note to self: Just do the very best you can. Every day.

Peace and Progress,

Cyndi