Month: May 2018

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Combining two weeks since I missed a week. Life just keeps going on and I had to RUN to keep up!

Recap based on my notes from all the appointments, and notations in “the book”.

Week 3 – May 13-19
Radiation treatments # 11-15 and Chemo # 4

This was the week we started to realize how up and down this process is going to be. There are good days and bad days, then there are awful days.

The end of this week introduced thrush. Apparently this is par for the course and will come and go throughout treatment. Thrush has been miserable! It coats his mouth with a very thick white coating and makes his saliva super thick, stringy and sticky. His tongue was swollen and sores on the sides.  Add this to the sloughing off of the skin in the throat and mouth from the radiation and you have a miserable mouth and throat. Food sticks and liquids irritate.  He was prescribed medication and a mouthwash to treat it.

He did pretty good with eating, but is very limited on what he can handle. Meats are a no-go, making him gag. Foods have to be very wet and slippery, so he tried poached eggs that were mashed up into more butter and water. I couldn’t even look at that mess, lol. He managed to force it down that time, but didn’t have the courage to try it again. Some soups go down ok, but the seasoning is usually too much. He can handle a few fruits still, but each day he seems to loose tolerance for more and more. A friend has been making him bone broth and some days he can tolerate it, but some days, not so much.

We were pretty nervous about the Erbitux rash, and whether or not they would take a break from the chemo. The goal was to have it not get worse. When we arrived for chemo they had a few nurses take a look but it was hard to tell.  We were able to compare pictures I’d taken from the week and see that it was at least stable. They decided to go ahead with that days chemo since it wasn’t any worse. Praise the Lord!

Week 4 – May 20 – 26
Radiation # 16 – 20 Chemo # 5

This week brought more changes and challenges.
The best news is that the rash is down from grade 3+ to a grade 2 so chemo will continue. He will continue on the medicine to reduce the rash for now.   The thrush is getting better but is still bothersome so he’s still on the meds for it.

He is starting to get a sore throat. His uvula (aka the dangly thing in the back of your mouth 😉 ) is super swollen, and it sticks to the back of his tongue and makes him gag even more. The Dr. called it Mucositis… “The painful inflammation and ulceration of the mucous membranes…” The throat pain isn’t too bad yet, he says it feels raw and only hurts when he swallows.

They prescribed another medicine called magic mouthwash. It has 4 medicines in it, an antacid (because a liquid diet can cause reflux) Benadryl to reduce inflammation and pain, Nystatin for thrush, and Lidocaine to numb the mouth and throat.  It helps some but not much. Getting it to sit on the throat long enough to numb it is hard. When his mouth is numb he can’t talk because his tongue doesn’t cooperate too well, lol. It only stays numb for about 15 minutes so the goal is to chug his Ensure as fast as he can while it’s numb. This is helpful the 4 times a day he can use it, the other times he just has to tough it out.

The phlegm that comes from the sloughing off of tissue is super thick. Guys, this stuff is so thick. I asked him how I could describe it or what I could compare it to, but he said there are no words. It’s so thick, globby and sticky too.  Sometimes he coughs on it so bad, it makes ME gag. Sometimes he gags so bad he throws up.  He discovered that swishing with Kombucha has been helpful and he does that throughout the day. All it does is help the phlegm release so he can spit faster and hopefully not throw up. Unfortunately it doesn’t reduce it in general.  It’s all “normal” and part of the process, but man it’s hard for him! He feels discouraged that there are three more weeks to go, and people keep saying the last few weeks of treatment, and the few weeks after, are the hardest.

The best part of all this, is that it all seems to be working! His voice is changing and isn’t so muffled anymore, and he can feel that the tumor is smaller. Before, if he pressed on his neck, or even turned his head, the tumor would close his throat. Now he can do both and still make sounds. It’s very encouraging to know it’s all worth it.

As I write this, we are a few days into week 5. I already have much to share come the weekend, things seem to change each day.

We appreciate every prayer, message, comment, meal, case of Ensure,  bundle of paper plates and plastic cups and all the other sweet ways people have helped and encouraged!

 

 

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Well I meant to update over the weekend but I ended up with a very angry stomach bug! I had a fever and chills so bad, I’m still sore from all the shivering! I’m well today and was able to attend a City Hall meeting to speak on behalf of our neighbors to try and stop the approval of a gas station/mini mart/ car wash with a liquor licence being built within 30 feet from their property line. We lost, but it was cool to see our neighborhood pull together.  Some of these folks have lived here since the 60’s, along side my grandparents, whose house we have owned the last 14 years.  After I finish this, I get to work on some FAFSA paperwork for Robby and Michelle. Fun times. 😉

Well that’s not what you’re here for so I’ll get on with it. 🙂

Week two is done! That’s 10 radiations and 3 Chemos!

Chemo – Well, good news and bad. The good news is that he got the rash that they say indicates the medicine is working. The bad news… he got the rash really bad! They have 4 grades of rash. Grade 4 is when it starts to get infected, and his is a high grade 3. It covers his face, scalp, entire torso and hands.

For those like me who want to know more…
The technical explanation:
                              Epidermal growth factor receptor (EGFR) is a receptor found on both
normal and tumor cells that is important for cell growth. ERBITUX is a
type of drug, called an EGFR inhibitor, used to treat cancer by blocking the
activity of EGFR. Blocking EGFR may keep cancer cells from growing.
(www.erbitux.com)
                             ** I advise you to NOT read that site, as it gives numbers that will freak
you out unnecessarily. For real. Don’t. I just wanted to give credit for
the information quote.

My translation:   So, basically, all skin, including his tumor, has these receptors that the medicine attaches to and prevents from growing. Well, some people have fewer receptors than others. So for example, in an inch of skin, you might have three receptors, but Carlos has nine.  His skin is going to react three times as much as yours to this medicine.

> {prayer request} > So while the rash means it’s working, they can’t take the risk of his rash getting to the point of infection. They started him on antibiotics and said if the rash is any worse than it was Friday, he will have to stop chemo until it clears up. We will find out Tuesday if he’ll get that round of chemo or not. Praise the Lord it doesn’t hurt or itch! Overall his skin is very dry and by morning large flakes of skin come off. He’s part reptile now lol.  The very dry skin has that tight, dry feeling and is irritating, but lotion helps and he’s finally found one that works well enough

The antibiotic is not gentle on his stomach, but it’s tolerable. Oddly,  for some reason it totally knocks him out and he sleeps several hours after each dose.

Radiation:
Ten out of 35 rounds completed! Earlier in the week he began to have the metallic taste. It wasn’t too bad. We found that swishing his mouth with a little water and a drop or two of lemon essential oil helped a lot! A few days after that, Robby made some chicken nuggets and those didn’t go too well. Carlos nearly gagged on the taste. As the days have gone on, more and more things taste gross. Not a metallic taste, much worse. Some things, like bacon and other mild and salty foods just have no taste. Then there’s things like sloppy joes (sorry Cari) and chicken soup (sorry Casey) that he can hardly force one bite down. (trust me, it was all yummy to the rest of us!!) Some fruits like fresh papaya, peaches (canned, but not fresh, strangely) and bananas, still taste tolerable. Anything acidic is a big gagging no.

He has started to get some sores in his mouth. Not sure if those are from radiation or the rash. They are tender, but not horrible yet.

I’ve noticed his voice is changing so that’s another sign that the tumor is changing/shrinking.

He’s been in good spirits until this taste thing showed up. He is very frustrated. Those moments you just reach up in the cabinet to grab a handful of a treat to nibble on… no more. I heard him from the other room regret doing that with something the other day.

We’re into week 3, and I’ll update next weekend, with occasional posts on Facebook as things go.

You guys. I can’t even tell you how good God has been with scheduling! Everything that has had to happen has worked out around Stacey’s schedule and someone being able to care for her! It’s a miracle! Even when her school year ends later this month and he’ll have two weeks of treatments left, CJ has a new job at Lockheed and goes in at 3 pm so he can hang with Stacey while we go to treatments! God is good all the time.

Quick video of his radiation process. Sorry for the end, I thought I’d stopped recording. I’m too tired to edit right now. 🙂

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The chemo rash… 

 

 

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I thought I would do a weekly update during treatment with a recap of all that went on. I’ll do little quips in the Facebook group during the week.
Chemo –
He began on April 24th, so he’s 2 down of that. The first was a double dose, so they let it set for a week before starting radiation. He’ll have 8 weeks total of it. The medicine he’s getting is Erbitux. The main side effect is a rash. Well, it wasted no time in showing up! By day 6 he noticed a little, mostly redness. By day 10 the little blisters, which look like white heads, showed up. They told him not to bother them, they aren’t white heads with puss, they are white blood cells. Most of them do pop in the shower, but he’s supposed to be very gentle. By yesterday, it is all over his face, chest, entire back and hands. His hands itch like crazy, not constantly, but when they do it’s very challenging. He’s tried a few things to stop it, but no success yet. We got a new cream today to try. Thankfully, the rest of the rash only itches if he gets overheated or sweaty. He’s been told to avoid the sun at all costs. Wide hat, long sleeves even for brief outdoor activities.

During his chemo, which runs for 3 – 4 hours once a week, he sleeps, restless, but sleeping in the recliner. They dose him with benadryl first and it knocks him right out. I take a walk, handle scheduling appointments, take care of bills, read, and poke him when his snoring gets too loud. I do a lot of that. 😉

They have to watch is Magnesium levels so every Saturday he has to have his blood test. So far so good on that. Funny, for someone who has cancer, his labs are beautiful. Ha! Seriously, his first round, not one thing was outside the normal range! The second time I could see things moving up or down, but nothing significant.

Time will tell if he will have any of the other side effects from the chemo meds. They did tell us that the rash is a good indication that the medicine is working, so we’re pleased to see it even though it’s unpleasant.

Radiation –

He is 5 treatments down out of 35. He goes 5 times a week, Mon – Fri. This is pretty quick. They gave him a card to scan so he can check himself in. We only wait about 10 minutes, then he goes back. I’m not allowed back so I either take a walk or read. He is back there about 15 minutes, then checks in with the nurse and he’s done. Monday and Wednesday are the quick days. Tuesday, he does radiation and chemo so that’s a long day. Thursday and Friday he also sees a Dr so those are also long days.

Side effects of radiation are starting to appear. By day 2 he was feeling some tenderness when he coughed which was new. By day 4 he was feeling pain that ibuprofen no longer relieved. They prescribed Vicodin for now. The pain feels like it’s in his ear, but his ears are fine. This pain has been there all along and is probably from the affected lymph nodes crowding that area and nerves so much. As radiation causes inflammation and irritation, that swelling is causing more pressure.

After 5 rounds of radiation he has started to feel his taste getting wonky. Sweet things aren’t tasting good. They don’t taste bad, but aren’t as pleasant as before. His morning smoothie wasn’t enjoyable. By Sunday he had a hard time tasting salty foods. He has always told me I use too much salt so when he asked to add salt to dinner that I already thought I’d overdone that salt on, I was like, shoot. Nothing is tasting gross yet, but they all say it will get to be that way in another week or so. He’s just finding less taste enjoyment in things.

He has noticed an increase of phlegm and coughing, sometimes to the point of gagging. I can only imagine how annoying it is to him, because it’s annoying to me. 😉

Both Chemo and radiation cause fatigue and I can see that. We talked this morning about that and it seems that Mondays are his best days. The weekend off of radiation and getting extra rest must be helpful.

I’ve been asked by several people (some rudely if you can believe that) if I have to go with him every day. The short answer is no, I don’t HAVE to. The long answer is, I GET to. My kids are either at school or work during that time. I get to be there as moral support, water drinking reminder, carryer of all the things, blanket adjuster, information bank because I literally remember every thing, every appointment and name and what was said. It’s weird. When someone asks him a question he just points at me. I’m happy to carry that load for him so he only has to focus on being a good patient. I asked him about my going every day and he said it means a lot to him and he’s so thankful. He said that even though it means a lot on the calendar, it’s means even more to him.

When we sit there I can see him. I can see him shift from the confident and invincible version he likes to be, into the one who is facing something he can’t fix. Sitting in that waiting room, I hear his breaths become sighs. From swiping his card at check in, to being called to the back, I see his stature sink a bit. His shoulders drop, his face clenches and he fidgets. He always says he’s okay. But I can see he’s struggling. He knows what’s coming. He knows the pain is going to get extreme. He knows that soon the rash and poor taste buds are going to be the least of his worries. Every time he sits in that waiting room, I can see the reality strike him again. I’m there for that.

I’m thankful for all the support, prayers, meals, donations, rides for Robby, texts and cards! It all means so much! We know the hardest is still ahead but we know we don’t go it alone, and all the hands and feet of Jesus remind us of that in very practical ways!

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