Our Journey

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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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Five Weeks…
Eleven: Doctor appointments.
Four: Scopes through his nose into his throat.
Two:  Scans, one CT and one PET
Two: Blood draws.
Three:  Appointments for me. Started out routine and ended in an ultrasound and
mammogram for what resulted in uncertainty and a recheck in six months.
One: Dermatology appointment for me to remove a precancerous spot on my forehead.
Two:  Dr appointments for Robby.
One:  Swollen knee on Michelle needing x-rays and a brace. (The tendon below her knees are too short. Something she was born with.)
Two: Kids enrolled in college for next year.
One: Kid starting a new job. (Lockheed, yay CJ!)
Two: Birthdays (Stacey 19 and Robby 16)
One: High School game night at our house
Five: The number of shifts at work Robby has to be driven to.
One: huge insurance fiasco landing us in a complaint and appeal cycle.
Countless: Blessings and signs that God is not surprised by any of this and He, not naps, will sustain us.

It’s been a whirlwind!

We met with the Radiology Oncologist and she went into more detail of what to expect from radiation. We scheduled the placement CT scan. This is where they will do a scan and make the mask that will hold his head in place during the treatment. That will happen this Friday.

We hope to have the chemo teaching session some time this week too. Monday we see the Medical Oncologist and if we’ve had the teaching session by then, he will give the go-ahead to begin chemo.

We learned from today’s appointment that the chemo medicine we’re using starts with a double dose a week prior to beginning radiation.  Hopefully that’s next week.

We made a little mistake…
We asked the Radiation Oncologist what she thought of the chemo medicine we chose. She said she would have chosen the other option. Of course she did! Ha!  She gave her input and shared why she would have recommended the other one for him. After some discussion I reminded Carlos that she didn’t say anything we hadn’t already considered. She shared nothing new with us. We had already weighed these things and made a decision.  He went back and forth but as the day went on, he decided to leave it as it is.

As for the side effects we can expect, but hope to avoid or minimize…
The radiation can cause hair loss on the side and back of the head due to where it has to hit to get the lymph nodes that are involved. It will cause a painful throat. Like swallowing razor blades or shards of glass. His taste buds will be damaged and food and drinks will taste disgusting. Taste might take years to normalize again. His salivary glands will be damaged and it may take years to regain his ability to make saliva, or to make an adequate amount. As the tumor breaks down, an excessive amount of mucus will form, which can cause gagging and irritation. He already is experiencing a bit of this just from the irritation of having the tumor there.  They did say if it gets real bad they can give him a suction machine to help.  His skin on his neck might get irritated or burned. He might get sores in his mouth, and his teeth and jaw could be damaged. He’ll wear a mouth guard to try to protect that area.  They will give him creams for the skin, mouthwash for the sores, and sprays to keep his mouth wet.  Fatigue is a huge side effect as well.

The Chemo has it’s own set of things.  It won’t cause hair loss but has a high incidence of skin rash on the face, neck and shoulders. Some get such a bad rash that they have to hold off on treatment to let it heal to avoid infection. Others get a more mild rash. It can be painful and itchy. They will give him creams to help with that. The rash often spreads to the inside of the mouth too, so with radiation causing sores and chemo causing a rash, his mouth could be very painful.  It can cause nausea so he’ll be given anti nausea meds with treatment, as well as benadryl to reduce any possible allergic reactions. Fatigue is a highly common side effect too.

We’re praying he falls in the mild category of all these side effects but it was daunting to listen to the most common things people encounter, some of those I mentioned are in 100% of those being treated this way, the rest are above 80% incidence of occurrence.

All we have wanted from the beginning was to get rid of this thing. Now that the steps are almost completed and the start date is in sight, I can’t help be feel anxious. I’m back where I was at the beginning, tossing and turning at night, unsure of what lies ahead and what it’s going to be like to actually go through this with him. I can’t even fathom how he must feel.

Even though Winter and Spring seem to be duking it out for determining ther weather here, Carlos got our swamp cooler prepped for when the heat decides to show up. He’s gotten a few other projects finished but the rest of what we’d planned to do will have to wait. I’d hoped this was the year we’d get grass in the front and back yards, but what’s one more year?! I didn’t pray for patience, but somehow I’m getting to practice it a lot! Haha!

My brain is tired but my heart if full.  The meals on appointment days have been so helpful! Thank you for walking alongside us in this way.

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Brief visit with the Medical Oncologist as follow up from Monday and confirming treatment choice. Carlos chose the weaker of the two options based on our research that shows fewer and less severe side effects and knowing that if by slim chance it doesn’t work, he can do a second round using the stronger of the two. Studies are showing a very small margin between the two and their success rate, small enough that given the treatability of his tumor, he feels confident the gentler drug will do the job. Dr was impressed in our understanding of the two options, and the criteria we based the decision on.

Dr also agreed with the decision to put off getting the feeding tube until absolutely necessary, if at all.

We then met with the gal in charge of clinical trials. She will call later today or tomorrow to let us know if he qualifies for one. Carlos isn’t super keen on the idea of doing a trial, but he wants to hear the details before ruling it out entirely.

For now, he will see the Radiology Oncologist Monday and the Medical Oncologist Friday of next week and somewhere in there start one or both treatments.

Knowing this is the beginning of healing, yet also the beginning of some very difficult weeks, leaves us both sort of like, …well I don’t even know.

I’m trying to order my schedule and prioritize the “have to do” and the “can wait” lists. Carlos is trying to eat all the foods he will miss eating lol.  We took care of mundane things like fixing a flat tire, puppy shots, making lunch, selling an old van that doesn’t even run, and planning a bonfire night with a group of high schoolers.
Okay, so literally as I was about to publish this, the call regarding the clinical trial came in. He doesn’t qualify so that’s not an option. An answer to prayer because it’s kind of nice to finally have a clear answer on something. Now we wait for insurance to authorize the chosen treatment. Even though we have a PPO, this still requires an authorization. Once we get that, should be mid next week, they will schedule a chemo teaching session for us and THEN we can schedule treatment to begin. Most likely that puts it to begin sometime the week of the 23rd.

Thank you again for the prayers, encouragement, and meals!

Meanwhile, don’t tell them, but here’s a goofy picture of two of our kids because filters are life. So I’m told.                        {Next Post}

 

We met with the Medical Oncologist to discuss the chemo side of treatment.
You have to hear this part first, then I’ll share the medical stuff.

We had an appointment with Dr “M” scheduled for next week and kept calling to see if there was a cancellation we could move our appointment up into this week, to no avail. Finally we asked if there were any openings with his partner, Dr. “F” and there was! Not only that, but it was at a time we were available and Michelle was able to get off work a little early to get Stacey off the bus. At the end of the appointment, he prayed with us. Like grabbed our hands and said “let’s pray.” Whoa. Totally feeling the Lord leading us in the messy part of life.

Now for the medical stuff…

Short version… we still don’t have a plan, we still have decision to make and we have a follow up appointment on Thursday.

Long version…
He started by going over staging. We’ve been told stage 3 so imagine our surprise when he said it’s stage 4 due to the size of the tumor and the mestazation to the lymph nodes. Of course we started to question this so he pulled up a chart of the newest staging methods. It turns out that despite all the above criteria, the lymph nodes are just under the measurement and lowered it to stage 2. So, 3, 4, 2… it doesn’t really matter. It doesn’t change the treatment plan, or the fact that this is still a very responsive cancer so we weren’t fazed in either direction by that. He even chuckled and said next month the criteria will probably change again. He was such a down to earth guy and talked to us like good friends. He showed concern yet confidence.

He explained to us that we have a choice of chemo meds. We didn’t expect to have any say in this, but every appointment has been full of surprises, so why not this one?!

He used artillery to explain why we have a choice. He said to imagine we had a target to eliminate and used a handgun. It would do the job and put a hole in the target and it would be conquered.  That is one of the  medicines.  Studies are showing this lower strength med is effective. Now compare that to using a cannon to take out the target. It would obliterate it. Totally overkill but leaves you with no doubt the target is eliminated. That is the other choice of medicine.

So essentially, Carlos has to choose between a medicine that will most likely do the job with fewer but still difficult side effects, vs. a medicine that might be overkill and also leave him with some even more difficult side effects.

Dr F explained that there are categories that would make him recommend one treatment over the other but Carlos falls in the middle of those categories. As we talked about all the options, risks, benefits, ect, Dr F asked if I work in the medical field. I explained about Stacey and how I love learning about these things. Well that go me in trouble. He said, “great, here is a medical journal you can read and let’s meet Thursday to discuss what you’ve learned and what medicine you choose.” I laughed, thinking he was kidding and I said, “Oh, don’t tempt me, I’ll actually do it!” He said, “ya, I can tell, that’s why I’m going to let you.” He feels confident either medicine will work, but we have to choose which batch of side effects Carlos is willing to live with. There are some I’m not sure *I* want to live with! HA!

He also wanted some time to see if there is a clinical trial he can enroll Carlos in, and he’ll be ready to give us that information Thursday as well.

Once we got home, I opened the link to NCCN and found myself searching through a 218 page document of research findings on the treatment protocols and outcomes. I took three pages of notes, made a list of words I needed to search the meaning and application of,  and I made a list of studies that were worth focusing on and those that I could disregard as they had few similarities to Carlos’ case. I spent 7 hours learning about these drugs.

It has now come down to a few concerns.
>  The gentler drug is new, only FDA approved since 2011, the stronger one has                                been used since 1978
>  Long term side effects can’t be confirmed in the newer drug
>  Long term side effects of the other one are a big bummer, one being permanent                          hearing loss.
> At the age of 59, how important is your hearing? Your thyroid? Your Teeth? Your heart? Your kidneys? The list of common side effects and complications goes on. I won’t even bother you with the less common side effects, which would be brutal to experience.

On a lighter note, not all side effects are harsh, some are sort of funny, like this one… ” your eyelashes may grow very fast, become very long and bother your eyes. Speak to your provider about how to best manage this side effect. The hair on your head may become curly, fine or brittle.” 

As for short term side effects, both would be challenging, but knowing it’s short term would make it tolerable. The hardest part is that one of them carries the same common side effects as the radiation does, so that means the pain in the throat would be worse, the sores in the mouth, the skin conditions, the dry mouth due to damage of the salivary glands, would all be worse and last longer.

All along this journey for Carlos I have had my ideas of what I’d want if it were me, but I hold that from him until I see he has made a choice and we can move forward. This one though, man, I have no idea what I would do. The thought of him going through this constantly brings me to tears.

We put a call in for a second opinion from another Medical Oncologist. We hope to bring light to something we have missed, some reasoning we have not considered, some glaring consequence to choosing one over the other. The decision is not made yet so please pray with us about this.

In other news… After this appointment we went to see my parents since we were down in their area. My mom is on week 3 of being home from her massive stroke in October. From total paralysis on her left side, to being able to use a walker is miraculous. She’s very unsteady but keeps working to build strength and regain coordination. It was refreshing to just enjoy their company. I cannot tell you what a blessing it was to come home and be able to dive right into research because someone had dropped off dinner just before we got home. I am so grateful!

If you could pray for one more issue… I am so frustrated with the insurance fiasco. Thankfully Carlos’ insurance is intact. but the kids are not. I’ve filed an appeal. However, the more we dig, the more problems arise. Way too much to explain here and way too much of my time is being spent on hold and re-explaining the whole thing to be told I need to call someone else.

Carlos seems to get very worn out by these long appointments. I’ve noticed a pattern of him having extreme fatigue the day after. Today he dozed until after noon. He did get some puppy snuggles, but couldn’t keep his eyes open for long. He was snoring when I took this picture so I cropped his face so I don’t get in trouble. 😉

 

 

 

 

 

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Today Carlos met his new Primary Care Physician. Since we changed insurance plans March 1st, we had to switch. I thought it was a good idea to establish him as a patient in case something comes up unrelated to his treatment. I also needed one person to receive all his records. For now the ENT has been getting them but down the road, his primary needs to have them too.

She was very thorough with him and discussed a lot of his medical history and current issues. She suggested he get some immunizations since he hasn’t had any since childhood. She specifically wants him to get the Pneumonia, DTaP, Tetanus, and Meningitis.

Carlos wanted to talk to his Oncologist first. Feels strange that he even has one of those to to call.

My thought…I feel like it wouldn’t be a good idea because if he had any reaction, it could delay starting treatment. The Dr. stated her concern about him having chemo and lowering his immunity and the risks of being exposed to something during this time. I defer to Carlos on this one, as it’s his decision and he needs to make the one that he will feel most comfortable with. We have had a child hospitalized twice due to vaccine reactions so we feel more anxious than others might. At this point, he is waiting for the call back from the oncologist.

Now for the fun stuff…
Some sweet friends brought us dinner tonight! They have been friends of my parents for years but became our friends when we connected over having children with disabilities. It’s like a tribe, you become family the moment you enter it. We are blessed to know them and thankful for their sacrificial blessing today, they drove from Northridge for the quick visit. The hands and feet of Jesus.

Here’s how today went.
7 – 8:30 am getting Stacey ready for school.
8:30 – 9 Help Robby get out the door and drive him to school with Stacey.
9- 9:30 Finish getting Stacey ready – change her pants again and force feed her breakfast. Get her on the bus and spend a few minutes chatting with her driver. I like to invest in the lives of those who invest her life. She has become a bright spot in my crazy days.
9:30 – 10 start some laundry, make a few phone calls, check in on my parents.
10-11 Make Carlos and I some eggs and get ready for Dr apt.
11:30 appointment
1:05 leave Dr office
1:10 missed Stacey’s bus. Thankfully Michelle happened to have stopped by the house from work at that exact moment to get her and wait a few more minutes for us to get home.
1:30 – 3:30 get Stacey settled home, change her, give her a snack, and another snack and another. Chase her out of the fridge 39275924 times so she doesn’t sneak food she’s not allowed to eat. Put her shoes back on. Change her out of the shirt she ripped. Change her out of the pants she leaked in. Put her shoes back on one more time. Switch laundry loads. Handle a significant issue with the website for our non profit. (For more about our daughter Stacey, find her on FB at High Fives for Stacey
3:45- 4:15 Pick up Robby from school
4:14 – 5ish  Start preparing a big batch of Stacey’s food for the next several days. Visit with our friends who brought us dinner
5:30-6:30 Enjoy the feast they brought. Send the kids off to church. Answer some emails regarding our insurance. Freak out that two of our kids actually did lose their insurance and I will have to appeal and deal with that nightmare asap.
6:30 – 7:30 Clean kitchen. Finally finish prepping the big batch of Stacey’s food and freezing some portions.
7:30 – 8:30  Stare at the pile of laundry I had stacked on the sofa that Stacey pushed onto the floor so she could sit there. Shake head and walk away. Opt to start writing this update instead of folding laundry.  Contemplate pulling my Cricut out to make the decal my daughter asked for but decide that laundry should get done first so I do neither.
8:30-9ish Get Stacey into bed which includes remaking the bed. Unload a few cases of diapers that were delivered a few days ago.
9:30 Grab my leftover Coldstone ice cream and sit down to finish this.
10ish Kids get home and here we are.

I actually chose to write that out because I feel awkward having people bring us dinner. As I reflected on my day I realized that sure, I could have made something, but it was SO nice to get a break from one more thing to do. Especially on appointment days and on Wednesdays because the older kids work full time and Robby is at school until 4 and then they all had to head out to church where one works and the other attends youth group so they aren’t around to even enlist to help. So I’m grateful even if it makes me uncomfortable.

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Carlos had two appointments that went well and didn’t result in a list of more appointments! That’s become a rarity.

Thursday the 29th we went to the Gastroenterologist with the recommendation from the Radiology Oncologist to get a PEG feeding tube placed.  (Read about that appointment here)

We left this appointment feeling like God had laid out a red carpet for us. As if He was showing us that He sees us, and He has the right people in place for us.

I rarely choose Dr’s without referrals from friends and family. I’ve had to do that through this journey several times. This time we had a time crunch as we were told to have his tube placed prior to any other appointments. I called a few places and chose the one with the earliest appointment that took our insurance. A wing and a prayer people!!

The first sign that we were in the right place was our encounter with the nurse. She asked where he is being treated and we told her City of Hope. She then shared her story of when her three year old son was treated for a rare stomach cancer in their Duarte branch before the Lancaster one opened. He is in full remission now. I couldn’t hold back the tears or the hugs as I listened to this young, brave mom who sacrificed so much for her son and now uses his story to encourage others by working in a gastroenterology office.

We sat with the Gastroenterologist and he explained everything and then let us ask questions. He agreed it may be necessary to keep weight on, keep calories high enough to maintain energy, and keep well hydrated. Then we heard the sound of angels when he said “you don’t have to have it put in until the need becomes obvious”.  That was contrary to all the other Dr’s! He explained that it is a simple, low risk procedure and he can do it the same day we ask for it, and it could be used the next day! He assured us it could wait! He did confirm the need to maintain weight, calories and fluids and said that if that becomes too hard, he will make sure he gets the tube the same day he asks for it. He was so nice and sat with us and not one moment did we feel rushed or petty. He was super kind!

We finally got to leave an appointment feeling excited! Praise the Lord!

Friday was the Dentist. Since it was the last day of Robby’s Spring break and we had done nothing fun all week due to all the appointments and being plain worn out, I skipped this appointment. I took Robby and a friend to a jump place and Michelle and I went to visit my parents. It was refreshing!

The Dentist went well, he had a cavity filled and a deep cleaning and was given the required letter of clearance for treatment. He has a few crowns that are needing to be redone but was told those should wait for after treatment. Yay! Another good news appointment!

I’ve been asked a lot if Carlos is in pain. The answer is sort of. He is definitely uncomfortable with that huge tumor in his throat. Eating is tiring because he has to chew everything until it’s mush and chase every bite with water. He has lost almost 20 pounds so far. He drinks a lot of smoothies and soups. Eating also irritates everything and increases the discomfort and coughing.  The enlarged lymph nodes in his neck seem to be pinching some nerves and causing sharp ear pain. He described it as something stabbing his eardrum. He’s been having that pain all along but it is slowly getting more frequent, almost constant. About a month ago he started taking ibuprofen once or twice a day for it and it helped a lot. Lately he has had to stay on top of taking it every 4 -6 hours or it’s hard to get back in front of that pain. He can’t tell if  he has become tolerant to the ibuprofen or if the pain is just getting worse but he’s having a harder time getting to a place of comfort.

Thank you all for your prayers, kind words, deliveries of Ensure, meals and hugs! We appreciate all of it! This week should be smooth. Only one appointment to do on Wednesday. In the midst of all this, we found out that since our insurance changed March 1st, he has to change his primary care physician. Not great timing, but no big deal. We will meet the new one Wednesday and he’ll have a full physical so she knows his baseline for all the not cancer things.

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