Day 8 Day Off

Wouldn't it be nice if every week you had Monday off. The MLK holiday brought a day off to those in treatment at MDA. It was a catch-up day for David and other patients in treatment. It gave him a day to wrap up things at work, rest and recoup. While I was in Gunter for the weekend, he rested. It was actually a productive weekend for us both, as his job is now Healing, and doing all the things for that to happen. 

Still doing things

First up, radiation things. Tell me more, please.

The radiation guide leads all head and neck radiation patients through this process. What to expect, who the care team is, weekly management visits, planning and receiving treatment information. All this information is important but what many patients really want to know is: What are the side effects? And how do I care for the side effects at home during the treatment. 

The timeline is my treatment bible

Fatigue is the first side effect listed. I first noticed this with the increase in naps/sleeping during the day, and then that David can still sleep at night. Hair loss and skin changes have not caught up with David yet, but likely will with time. Due to the sinus area being in the obvious field of treatment, his nose will feel stuff, congested and may have bleeding. Swallowing is affected as the throat is also in the treatment field. Eating soft foods and drinking meals will be guaranteed. The guide talks of the possibility of a speech pathologist to assist with safe swallowing, and what nobody really wants, but may be needed, is a feeding tube. You probably know by now this is a personal goal of David's to not have one, but we just can't predict that. As the salivary glands are nearby in the treatment area, the saliva gets thick and sticky. Taste is likely going to be distorted, with some foods tasting bitter, metallic or have no taste at all. Pain is included in the side effects due to a myriad of things such as skin burns, difficulty swallowing, eye dryness, crusting inside the sinuses and many more things I could list but you get the idea. The helpful part is the chart that illustrates how long to expect these side effects to occur and the average recovery time of them. It's always good to know as knowledge is power. This helps all the patients put a general timeline to their side effects, although everyones will be a little different depending on their own radiation field of treatment. 

Can’t stop the feeling 

It's time to talk home care during the treatment. 

Bathroom pharmaceutical explosion 
Only one side shown

David already has his arsenal of remedies, medication, mouth and sinus rinses, creams, lotions, fluoride, and nutrition elements ready - or at least the first line of defense for what's to come (and what has already arrived). 

CVS in the kitchen

He has jaw exercises to do several times a day to fight the tightness that develops. Nutrition is key, and what we place in the NutriBullet Pro blender is very important. 

My newest fav thing ever

Fruit, protein powder, ice (water), yogurt, fresh veggies and more. I'll be honing my smoothie skills over time. We'll see what the favorite recipes wind up being. I can't sneak in the veggies yet. Not yet......

Thank you, next

I could spend way too much time talking everything radiation, but I feel like a general overview is fair. So, with an understanding of the (above) stated side effects of radiation, let's talk chemotherapy. Once a week (generally on Tuesdays) David has chemo. The agent used for him is CARBOplatin. Before each chemo session starts, the nurses administer zofran (anti-nausea) and dexamethasone (steroids) through his IV. He does not have a port, and they start an IV each session right now. 

Giant chemo book

The chemotherapy guide is about 3 times bigger than the radiation guide, and that's about what the chemotherapy does too, it hits about 3 times as hard. David has his chemo once a week (mostly on Tuesday) and then will likely be sick for 3-4 days. The number of days afterwards is still a trend we are watching. Not all our data is collected yet as there has only been one chemo treatment thus far. Yet, we will figure out the timing of the effects and should become able to rely on what those after-results will be and about how long they will last. It increases with time, so there's that. Along with the side effects of radiation there will be the side effects of chemo simultaneously. As in the photo above, there are more side effects of chemo so it seems. What we've noticed so far is that it's sometimes hard to differentiate which cancer treatment is really causing which side effect(s). None the less, our guide books help us with home care. It also takes about the importance of protecting loved ones from the chemo agent. It reviews everything from not "splashing" when using the restroom, cleaning soiled bed linens and towels to keeping the bathroom clean and free from the toxic chemicals excreted from the body such as urine, stool, vomit or body waste. Safe handling guidelines are important for not only the patient but for the caregiver. 

It's a real thing

I wish David had never seen this

Little would I know that David has one more reason for forgetting where the keys are or where his wallet is. It's Chemobrain. Turns out it's a documented effect of chemotherapy, and he'll probably use this for the rest of his life. 

Is wine-ing allowed

Nope, no alcohol - not that we are big drinkers anyway. Instead we'll stick to  clean foods as much as possible. Is whining allowed? I think there will be a fair amount of David sharing his feelings. I'm here to try and soothe his soul, body and spirit as much as possible. So let's get this week started, shall we?

First up, David's birthday is tomorrow! He'll be 63 years young and has a big day planned:

Wake up and head to lab work at 7:30 am

Quickly head down the hallway(s) to his 1st radiation session of the day at 8:30 am

Next up, a visit with Dr Rosenthal, his radiation oncologist for his weekly management check at 11:45 

Then jiffy quick over to the infusion center for his chemo at 12:15

And lucky him, since it's his birthday and it was a holiday on Monday, he gets a 2nd radiation treatment at 2:50 pm. 

We had originally thought we would celebrate his birthday Tuesday evening, but instead will spend the evening at the apartment and have a nice bland, soft meal and a zofran for dessert. And probably early to bed for the birthday boy, too! 

Last day at work

As David moved through this MLK holiday treatment-free, he used it to tie up all the loose ends at work that he could. With increased congestion in his sinuses, scratchy throat and mild nausea lurking, he finished the day strong and is ready to tackle his new job of healing.

. 

He loves his green screen 

We did have a meal out tonight, as after 3 days of down time, we were able to get out to his favorite meal of a gyro sandwich at Nikos Nikos here in Houston. Comfort food, warm and soft. What a great evening it was. 

We’ve only just begun 

We will call it a night in anticipation of a busy birthday Tuesday. I feel like I've only scrapped the tip of the iceberg regarding all the information we were given for both radiation and chemo. David said it best tonight with his closing remark, "I'd rather not know all of it, and just take it as it comes". I'm all about that, with the exception that I need to be the one prepared - or at least mostly prepared. Can I be willy-nilly and prepared all at the same time? I think so, because as I practice my potions in the disguise of smoothies, David has given me my witch name of Cybil. I’ll get to brew up lots of things for him over the next few weeks. Let’s see what it all brings us and tackle it as we go. We'll try to stay ahead of the curve, but we are on a slippery road and here's hoping we stay in our lane. Now where did I leave my magic wand.....

Peace and blessings, 

Cyndi