Month: June 2018

In the final countdown!!
Carlos is doing as good as can be expected. Six more radiations and one more chemo! He is using the new mask (see story and pics here)  and all looks good. He is starting to loose his hair around the back of his neck so his hair line is rather high. Something odd we noticed about that though is the gray hairs have gone first and left him chunks of wispy black. It’s from the radiation and he’s told it will grow back… eventually. He has noticed he hardly has any facial hair on the sides anymore, and despite my prayers to the contrary, his goatee has stayed in place. 😉  He’s maintained his weight much better this week, back to only losing half a pound a day.

We’re starting to talk about post treatment care and what that’s going to look like. He is constantly being reminded that when treatment stops, he won’t just feel better. The effects, both good (tumor shrinkage) and bad (throat pain, dry mouth, no taste buds, fatigue ect…) may even get worse before they get better.  So although we’re excited to be near the end of the daily grind, we’re only about halfway through his feeling so lousy.

Meeting people in waiting rooms is one thing, it happens all the time. There is just something different about a cancer treatment waiting room though. We met a sweet couple, Larry and Judy (or maybe it’s Judi?)  We chat every morning as our appointments overlap. He was being treated for a different type of cancer and they openly shared many of his challenges. Things you don’t just chat about in the grocery line ya know?!  There’s this connection. Club members. Well, Larry got to ring the survivors bell last week. I think I cried more than Judy did watching him. I was overwhelmed with joy for them. His labs look good, showing no signs of cancer. He’s been cleared to take their long planned summer trip around the country with two of their grandchildren. They love the Lord and attend a nearby church and can’t wait to return to their various ministries there. They were such a bright spot in our morning routine and the few times our timing was off and we didn’t see them, I missed them. I was so excited they were given the answer to prayer they had so desired. I pray for many more joyful years for this sweet couple.

So people have been asking me a lot about how I’m doing. I ‘m good in the big picture. I have the help I need, and a list of people I can call on if I get in a pickle. I got to visit with an old friend, and although she is “older” 😉 I mean old as in we’ve been friends for over 20 years. It was so good to sit face to face with someone who knows me so well and knows all the events in my life that have led me to be right here. Sometimes it’s in those conversations that you find out how you’re really doing. I could feel the areas my heart felt light and the ones that made my heart ache as we talked. I won’t spill all that mess here, but I can say that I’m okay, my needs are met and although being a caregiver to two people in your home is taxing in every way, you can always do what I did and hire a housekeeper and not feel bad about it. 😉

Really though, Psalm 73:26… “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”   My flesh and my heart have both failed me. Time and time again. I have had times of selfishness when I mope about all the ways this has affected me, (I know, ridiculous. I’m not the sick one.) I’ve had times of being so tired I choose to sleep over shower, or nap over eating. There have been times of loneliness that border on depression and at the same time, there are times of overwhelm that makes being alone the only thing I want.  I’ve had frustration that makes me overly sensitive.
But God.
He keeps gently showing up. He reminds me of Philippians 4:8 “…Whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.”  When I do that, when I stop focusing on me, or Carlos, or Stacey, or Robby, or CJ, or Michelle, Or Alexia and Andy… When I focus on the One who is all the good, I don’t have room for selfishness, moodiness, frustration, fear, anger. They don’t always move over gracefully, but He does move them.

Whatever your situation is, whatever is stealing your joy, you can choose where to look. Inward or upward. Rest in His hands. It’s so much more comfortable.

 

 

Halfway there! It’s nice to be closer to the end than the beginning!

Monday was Memorial Day so City of Hope was closed and he had a break from radiation. It may not seem like much but man it was nice! Since he has labs every Saturday (specifically timed in relation to chemo, so no flexibility there) Sunday is the only day with no place to go. Having Monday off was very refreshing!

Tuesday was chemo and again all his labs look perfect. It is surprising the staff, as they rarely see someone stay so stable. They especially expected his magnesium to plummet but it hasn’t!

He is having some throat pain but thankfully it’s still mild and only when he swallows. His biggest battle is having no appetite but needing calories. There have been days he doesn’t drink his required calories, taking in less than 200 in a day. He lost 7 pounds in 7 days. He’s lost over 30 pounds so far.

On Thursday at the weekly Dr appointment, he was told he had to have a new radiation mask made. He balked at the idea but the Dr gave no choice. That mask was made on Friday and now that they all know me better, I was allowed in to watch and record it so I’ll include that below. This stuff fascinates me lol. There are some photos below too if you’re not a video watcher. 🙂

It takes a few days for the radiologist to make the markings so I don’t know when that will be put to use.

When he has chemo on Tuesday, he usually sleeps the rest of the day and through Wednesday. His biggest discomfort is the thrush that is lingering. It’s a challenge to battle that since thrush thrives on sugars and dairy and Ensure is loaded with both. I have yet to come up with a tastey (to someone with damaged taste buds) and high calorie substitute. It would take too much quantity of anything else to get the calories in.

When I talk about him having no appetite, the best he can describe it would be this… have you ever had a meal that was SO good that you ate until it was all gone, waaayyy past the point of feeling full? Well imagine that and then imagine being told you HAVE to eat the same amount again. uhg. No way.  That’s how he feels all the time. Even first thing in the morning.

Friday was Stacey’s first day of Summer break. This makes the schedule a little wonky. There have been so many ways the Lord has shown Himself through all this, but He is the bomb at scheduling! 😉 Every time something comes up, there is a solution waiting. Like Friday, with Stacey being home and Carlos needing his new mask made, we would be gone longer than I’d want to take her with us. Well, perfectly timed, Michelle had the day off and could keep her at home. Even the next two week of her being home and still having treatments, it all falls into place.  Robby’s work schedule will change on the 12th, but so does CJ’s and guess what, with both changing, someone will still home with Stacey since Michelle will be working. Back when we had soooo many appointments to go to, every single time, the schedule worked out, even having someone to get Stacey on or off the bus, and getting Robby to and from work. It was a balancing act for sure, but not once did we get in a bind. We did take her to one appointment a few weeks ago, and it went so smooth and was actually a huge blessing. So, praise the Lord!

Also, in other news… last Thursday was FOUR years since Stacey’s last seizure! In October it will be two years off all medication. So you see, the Lord is still in the miracle business. Amen!

 

Below is a video that shows the mask before it is wet and he explains what he will do.
The beginning shows how he soaks the mask first, then they talk a while about shims and the fitting of the mask. The mask will cure over the next day and shrink more so they use cloths and some plastic shims to allow for that shrinkage as well as to allow room to add a shim if they need to tilt his head one way or the other.  The towels are all labeled with his name and notes on how many folds. These stay with his mask at all times.

 

 

Below is a longer video of the entire process.
Key moments you can skip to if you just want the main thing…
0:00 – 2:42 – positioning him and the shims
2:42 – 6:35 – shaping the mask
6:35 – 8:00  – explanations while the mask dries.
8:00 – 10:38   marking the mask and adding the BB’s.
10:38 – 13:00 watching the cat scan and screens from behind the window
13:00 to the end – removing the finished mask

By the way, the blue ring he is holding is to keep his arms in place. They take pictures so they can see each day that he is the same spot – consider the changes raising a shoulder can make to your neck and skin. With radiation, those little changes matter a lot.