March 27

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Yesterday was the appointment with the Radiology Oncologist at City of Hope. We went in thinking it was the first step to starting treatment. It ended up being the first of MANY to starting treatment. It lasted almost two hours.

What we learned:
It’s stage 3
He needs a PEG (feeding tube)
He needs dental clearance
He has to see the Medical Oncologist
He has to see the other Radiology Oncologist after all those appointments take place.
He will have chemoradiation. It’s both treatments arranged in a way for highest results. The general plan is daily radiation for 6-8 weeks and weekly chemo for the same length of time.

Regarding the PEG. We had thought it was an option to assist with keeping calories and fluids up during the weeks of an extremely painful throat. Carlos wasn’t going to do it because it has it’s own set of risks and he’d rather tough out the pain with meds. It was a choice of  awful or awful.
What we learned at the appointment was that is a secondary reason. The primary reason is much more daunting. When radiation begins, they will create a mask that looks like stiff mesh. That mask will be placed over his face and secured to the table during each radiation session. It’s job is to prevent any movement to ensure the radiation beams are hitting the exact spots they need to. If he looses weight during this time, the mask will become loose and allow movement and he could end up having to re make a mask and start all over, not to mention possibly hitting the wrong areas. On the 29th he will have a consult with the gastroenterologist to arrange the procedure to place the tube.

The dental exam is to be sure nothing major is brewing and to get a good cleaning. The radiation can damage the jaw bone’s ability to heal so it will be a long while before he could safely have any major work done. That appointment is on the 30th.

The Medical Oncologist will help us choose which chemo to use and the schedule along with answering more of our specific questions regarding treatment.

Today was a hard day for me.
I had to cancel attending Women’s Retreat at Hume with our church.
I had to cancel my plane tickets to see my dearest friend in Idaho for her 50th birthday. I haven’t seen her in a few years. I miss her a ton!
I had to cancel my plans to attend Kickback with our youngest. (our church’s high school camp I’ve attended for over a decade)

I am aware of how self absorbed that sounds. I’m not the one fighting cancer and having my throat burned to shreds. But I felt sad about letting go of those plans. Trading them in for watching my hubby suffer because cancer doesn’t care about these things is hard. So today I moped. I took a nap. I went out to lunch by myself with no makeup and a hat on. I’ve been a caregiver to our daughter for 19 years. I know what it takes. For me, it takes an occasional day like this. Now I feel ready for the next two days of appointments and who knows what else they will lead to.

While I was moping, I was mulling over one of my favorite verses: Jeremiah 29: 11-1229746997_10213812779247348_1114129936_o

I take comfort in knowing none of this catches God by surprise, but it’s catching me by surprise and I take a while to catch up with His plans for us.

I asked Carlos this morning how he was doing. He’s hanging in there. He’s not like me, he doesn’t talk through all the things. He says things like “well, this sucks”. He knows God is in control and fretting doesn’t help anything. I’m glad for that. It takes strength to have faith and let go of things you can’t control.

That’s all for now. Our list of miracles is growing, the way God shows up in the little things reminds us that He sees us and He leads us.

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City of Hope antelope Valley


March 23rd

{Previous Post}

Cancer is a full time job. I mean, life in general is, but cancer doesn’t care how busy you are.

I opened my dishwasher around 10 a.m. to unload it.

It was around 5:30 that I actually got to the task.

I spent the entire day on the phone, emailing, sending records, requesting records, explaining and re-explaining every thing over and over.

There is a 5 cm by 4 cm tumor in my husbands throat, he can’t wait another 2 weeks for his radiation intake appointment, and who knows how long after that before treatment would begin. All of the doctors he has seen so far have rushed every test, squeezed in every appointment, and expedited results.  They all share the sense of urgency due to his struggle with swallowing food, his major voice impairment and his significantly reduced airway. This has all been done through UCLA and it’s been fantastic because everything is in their digital portal and they can share his records instantly.
With UCLA being a good hour away, and City of Hope (CoH) being five minutes away, he wants treatment locally so we are transferring care now.  CoH has been very nice and tried to be helpful, but apparently Cancer doesn’t care about Spring Break! So many of the specialists he needs to see are on vacation.

Long story short, it took a LOT of calls and just a few people willing to go out of their way to help. There was some holdup with getting records send over from UCLA, so all they had was the biopsy report and that didn’t give info on the size of tumor he has, so they didn’t see the urgency. Eventually some angel found out that he had seen a local Dr for that first visit (story here) and she called him and asked if he could validate the urgency. (I totally understand this. Everyone with cancer has a sense of urgency and would want to expedite. Normally I totally respect the scheduling, but this really is urgent. See video of his airway blockage here)  Well, even though that local Dr had done nothing more than a few second scope and noticed “something in there”, he knew back then that there was urgency here. Bingo! That’s all CoH needed and he is now scheduled for his Radiation Oncologist this coming Tuesday!

Now, that was a huge ordeal, but what happened smack in the middle is what brought me to tears. I got an email simply saying “…your medical insurance has been cancelled and a refund of your last payment is being issued…” uhm… I think I’m going to be sick… So I call my agent, leave a message, and freak out. She responds with an email saying “…so, none of you are currently insured as of March 1st…”  I felt sucker punched. Carlos and I both trying to gather payment records, any correspondence notes, and prepare for a call to both the insurance company and our lawyer. (We use Legal Shield and love it for things like this.) We might have both expressed some majorly displaced anger towards each other… it wasn’t pretty.

Basically in January during open enrollment, we switched all of us except Stacey and Robby to a new plan to be effective March 1st. We told our current plan we wanted to cancel three of us, and leave the two on the plan. No problem, new bill was issued, paid and confirmed. Apparently they denied that arrangement and failed to contact us, but instead cancelled all of us.

The reason… Since I was the primary person on our plan, and wanted to change plans, it meant Stacey and Robby were getting individual, not family, plans. When they went to do that, they started by removing them from our family plan, but since  it was after open enrollment, they couldn’t enroll them in their individual new plans. The computer flipped out and cancelled all of us from all plans, assuming all of us were outside of the open enrollment period.

Thankfully our agent and the Insurance rep was able to use the “qualifying event” protocol. A qualifying event is a list of circumstances that allows you to enroll in a plan outside of open enrollment. Our qualifying event was that we lost our insurance at no fault of our own. (that’s the key part right there… not our fault!)  So, we had to re-enroll all of us and they will retractivate it back to March 1st. PHEW!!  That was a horrible feeling!

As that was winding down, we got a call from the Dr to go over the PET scan now that the final report was in. There are a few goodies in his right lung that they need to watch. They will decide Tuesday if they look closer prior to treatment or if they hope the chemo takes care of it and look at it again after treatment. It may not be cancer there, but they couldn’t be certain it isn’t. As I passed this info on to Carlos, I saw his entire body sink. It’s heartbreaking to see.

On the upside, he was excited to be well enough for a quick RV trip with his friends to ride dirt bikes. His breathing gets labored when he exerts even a little (he noticed this while packing for the trip even) so he most likely won’t do much more than putt around camp, but he will enjoy the fresh air and good company.

Even in days like this, I see God guiding every step. Sometimes He lets me flounder on my own in a swirl of panic, then He reminds me He’s got this. He isn’t frantic. That’s all on me. When I let it go, peace comes.

The link to the scope video is here. 

{Next Post is here}


March 7th – 22nd

Previous Post

The 7th
The week of waiting for the biopsy results was long.

One of the things she had said that day was that the tumor looks too large and invasive to operate. It would require way too much reconstruction if they did. So we did leave there knowing he was most likely going to have to have treatment along the lines of radiation and chemotherapy.

Carlos took the preliminary news really hard. I gave him as much space as I could. He slept pretty much the rest of the week and the weekend. I’ve learned long ago that he and I respond to crisis differently so I let him do his thing, but was also very concerned. I tried to talk to him about things we needed to take care of before treatment started, but he wasn’t ready.

I was having my share of angst. I wasn’t sleeping well. Every time I rolled over, my brain would shout “my husband has cancer” and I’d feel the adrenaline rush and sleep would avoid me.  If I was awake, I could control my thoughts. If I slept, my thoughts would catch me off guard. I snuck in naps but tried not to complain about my fatigue. I could only imagine how he felt.

The 8th
We have friends who have had similar cancer so I arranged dinner with them. He literally begged me not to make him get up and go. I told him that we either go to dinner where he can leave when he is ready, or I’d have them come to the house, then he couldn’t choose when it was over. Whatever works, right? The dinner helped a lot, he seemed to come out of the fog. I let him be for the weekend and I did some things with our kids while he rested and mulled things over.

The Dr. had been so confident in her diagnosis, yet we held on to that hope that she was wrong. “She did say it could be a rogue node that just got out of control, right?”  “She did say sometimes they are benign, right?”  We went about our usual things as much as we could but that nagging thought was hard to shake.

After 4 days of sleep and pondering, Monday came and Carlos went to have our taxes done so they’d be out of the way. It was good to see him doing things. He needed the distraction.

Then Tuesday came. On the 13th, a day before we expected the call, I was getting Stacey to the bus and a call from Carlos came in. The Dr. had called him.

The biopsy confirmed it. It is positive for cancer of the oropharynx. A PET scan has been ordered to see if it’s spread. The tumor is attached to a tonsil, the base of the tongue and the epiglottis.

Here is where God’s grace was so evident yet again. Since we got the call on Tuesday instead of Wednesday, we were able to get the PET scan arranged for Thursday.  When I called to schedule it, they were expecting my call and I didn’t have to answer a bunch of questions, they just put him on the schedule. Things were getting real.

I spent some time with my friend Google again and was making a list of questions. The day before the scan, he had to follow a no sugar, super low carb diet to be sure the scan was accurate. He had some work to do but we managed to meet for lunch.

We sat at that table and talked about things like “would you take a feeding tube if they say eating will be too hard?” “You should see a dentist to be sure your teeth and gums are in good health before all this starts.”  “We should start buying the ensure shakes now so we can have a stock and not a huge expense all at once when the liquid diet comes.”  “On the upside, at least we’re at the beginning of the calendar year so our maximum out of pocket for the insurance won’t start over in the middle of all this.” My nervous laugh kept the conversation light. But I lost it after we parted ways.

Who talks about these things over lunch??? People with cancer do. Wives whose husband has cancer do. How is this even us?

The 15th. 
The PET scan went smooth and we were back in the waiting mode. A few hours later we got a call from Dr Kim. She said she had been stalking his chart to see the scans as soon as they came in. God really did lead us to the best! She said the scan confirmed the tumor and three lymph nodes lit up. She was encouraged the nodes were on the left side only, and hadn’t gone to the other side of the neck. She assured us this is a highly responsive type of cancer. She said “if you have to have cancer, you picked the right one to have.”

By the end of the call, we felt better, not worse, even though the spreading to the lymph nodes wasn’t great news. She was confident he would respond well to radiation and chemo. Then she had us laughing when she said “you know, I really feel a connection with you guys, when I saw Carlos’ age on his chart, I realized he’s my dads age. I really want to treat you like I’d want my dad to be treated.” We had a good chuckle over that. I refrained from telling her I’m not old enough to be her mom though.  For the record, Carlos is 59, I’m 47. Ya, I collect vintage things…heehee.

The 22nd
We had to take all of our records to a surgical oncologist. It’s protocol for creating a treatment plan. We drove down to UCLA in Westwood during the heaviest rain California has had in years! It took over two hours to get there.

We saw Dr Elliott Abemayor and he was a gem! He walked in the room and asked Carlos if he knew why he was there. Carlos said “well, apparently I have cancer in here and you’re supposed to tell me how to get rid of it.” The Dr. said “yes, that’s right, but let me tell you this first. You have a very curable cancer. Do you hear me? You have a very curable cancer.”   An angel from the Lord I tell ya!

He did a thorough exam and another scope. He confirmed Dr. Kim’s assessment; that the tumor is too large for surgery. He feels fairly confident radiation and chemo will get rid of it. If anything is left, surgery would be discussed at that time.

SO, here we are. We will take his recommendation and all the records to City of Hope and they will coordinate radiation and chemo. We know it will be rough. His throat will be extremely painful. People describe it as chards of glass or razor blades with every swallow. There will be weeks of liquid diet. Some people do need a feeding tube in order to stay hydrated and keep calories up. His sense of taste will be damaged and things will taste horrific. Some things may never taste the same again. His hearing, teeth and jaw might be damaged.  Fatigue will set in. It is going to be hard. There are a lot of unknowns. We have to step forward in faith. Faith that the Lord is directing this journey and the people he puts on the path along the way, and faith that no matter how hard it gets, it is the twinkling of an eye in the scope of eternity.

We don’t have a timeline yet. We are currently waiting for City of Hope to schedule his radiology and chemo team appointments. We praise the Lord for a CoH branch just 5 minutes from home. 
{Next post.



Totally fun right?!
Worst rain ever!
My brain. All the notes from calls and appointments and records are in here.
“I will praise You in the storm”




There. She Said It.

—->>>>If you haven’t read the rest, here are the parts you might have missed:
Part 1 – The “Cold”
Part 2 – Just a peek
Part 3 – Strange things
Part 4 – I’m not (totally) new here

March 7, 2018

Carlos was happy to have the appointment set and getting eager to have this thing removed. He was still expecting it to be an infected tonsil that would have to be removed. In case I was wrong, I didn’t say much about what I thought it was. I did mention to him that I was concerned and pretty sure it was going to require surgery and some follow up treatment.

On the 7th we went to the satellite UCLA office and saw Dr. Irene Kim, ENT. Usually I ask friends and family for recommendations for doctors, but I didn’t want to tell too many people yet.  I picked Dr. Kim off our new insurance list and prayed she was the one we needed to see. God was totally directing me to her!

Dr Kim went over all his symptoms and did a thorough exam and a scope going through his nose down the throat. She explained every step and everything she saw, and was looking for. She had the images up on the screen for me to watch also. She noticed it bled when the scope touched it. Carlos had no pain. She sat down and told us she needed more tests but has seen this enough to know what it was. She said. “I’m not happy with the look of this and I’m concerned it’s not a good thing.” My eyes met hers and I knew we were on the same page.

Carlos asked some questions about his tonsil and if he could handle a dirt bike ride. She told him the growth had eaten his tonsil and there wasn’t much of it left. She said he could ride, but his airway is restricted so he needs to go easy.

She sent him to the lab immediately and set up a CAT scan in an hour and said to return to her after the scan and she would see him again to go over it and attempt an in-office biopsy. She now had his full attention. She just kept assuring him and told him to get the tests and came back. She had such a confident and warm demeanor, we both trusted her immediately.

Labs were quick and we grabbed lunch in the hour wait for the scan. We talked in code. “If it’s something bad…”
“If it’s just a surgery, we should be prepared…”
“If it’s something bad, what should we…”

He didn’t want to eat much.
I always want to eat much.

Back in her office, she got him in immediately. She had the scan images and let me record her explanation of what she saw. She has seen it before. The tumor is large, over 5 cm long. She also said there were a few lymph nodes that were twice the normal size. She’s confident it’s not a nice thing and she really wants to do the biopsy.

Due to bleeding and gagging, the biopsy attempts were so hard on Carlos. It took over two hours of attempts and resting and attempting again and resting again, before she had enough tissue. At one point Carlos asked if he could be put under and let her just take a big piece. She said that isn’t an option because it’s so big, they wouldn’t be able to intubate him, as it blocks most of his airway.  The option would be to do it in an OR and that way if the bleeding got out of control they would be equipped to rescue, but he’d still be awake. By God’s grace, she eventually got enough tissue to test it.

Carlos again brought up tonsils. She was trying to be cryptic and I finally said, Dr Kim, you can say what you think it is. So she said it. “I think it’s squamous cell carcinoma and I need the biopsy to confirm it.” Carlos isn’t as good a friend with Google as I am, so he asked what that was. “Cancer.”

There. She said it.

Now we wait for the biopsy report to confirm and give more detail.

Next Post Here

Getting his scope done and a few pics from the CAT scan so you can see “it”.

He handled it all really well




Without the orange circle so you can see it better.
“it” has a face. “It” will be punched in the face.

I’m not (totally) new here

Previous Post here

While he was gone, I managed to hold down the fort just fine, and added the task of painting the entire inside of the house with CJ (our 24 year old).

In between painting and life with Stacey ( and being Robby’s chauffeur to school and work, I had a few peeks at my good friend Google.

Let me catch you up real quick on some of the things I’ve been through with the help of the internet over the last 18 or so years…
*Agenesis of the Corpus Callosum (Stacey, our 4th kiddo’s brain disorder)
*Status Epilepticus (also Stacey)
*Chromosome deletion on 3q (Also Stacey)
*Chronic lung disease (Also Stacey)
*Mitochondrial Dysfunction (Also Stacey)
*Dietary caused eczema (Also Stacey)
ok, Stacey’s list goes on so I’ll move on…
*Head trauma and CSF leak (Alexia, our oldest, at age 19)
*Chiari malformation (also Alexia,  I’ll share her story here another time)
*Triple Jaw fracture (Michelle, our middle kiddo when she was 10) (which thanks to Stacey I knew how to read an xray and caught it even though the urgent care doctor didn’t and I knew to take her elsewhere to be treated for shock and concussion and the fractures resulting in two surgeries. Another story I’ll share here later)
*Lymphoma scare (CJ, our older son)
*Major Sinus Surgery (Carlos)
*Adrenal fatigue (me)
*Severe anemia (also me – needing three infusions, another story for another time)
*My mom’s heart attacks and strokes

That’s not even all the things!

I tell you that so when I say I have a good relationship with Google, I mean it. I love to muddle through medical journals. I avoid opinions. I seek facts. I avoid hype.

So while Carlos was having a fantastic time, I already knew. Usually when I’m wrong, I feel it. Sometimes I push it aside and make sure, like when they thought CJ had lymphoma but it was cat scratch disease. We went through some of the tests, but not all, I felt the need to hesitate, to wait, to let things pan out on their own. I didn’t feel that way this time. I tossed and turned in my sleep. I just knew.

About halfway through his trip during a facetime conversation, I noticed if he turned his head to the side, his voice stopped.  I noticed certain sounds he had a hard time saying.  He sounded like he had a bite of mashed potato stuck in his throat. I knew it wasn’t food. I knew it was a tumor and I knew it needed to come out.

He had left on February 11th and would return on March 2nd.  On March 1st our new medical insurance kicked in. We had changed it back in late January, saying we could down grade our coverage a bit. Our insurance was costing more than our mortgage and was going up again so we switched it.  We reduced it.

While he was gone I talked to several doctors to see who took our insurance and who could also help us identify this thing. I chose one from UCLA in a satellite office about 45 minutes from us and scheduled an appointment for March 7.  I had a list of  symptoms, questions, and tests I planned to ask about, in case she missed my sense of urgency.

{Next Post Here}

Some pictures from his super relaxing trip!


Strange things

Previous Post

I’m not a good waiter. As in waiting for things, not serving tables.

With only a day and a half before his trip, we had a lot to do and were pretty distracted. We chatted a few times about if he should go or wait. He hadn’t seen his parents in 8 years. They are in their 80’s and live alone in South America. I understood his need to go and the sense of urgency to check on them.  In October my mom had a massive stroke. It has greatly affected her and my dad. Her recovery is slow and hard and incomplete.  I shared his sense urgency… if her stroke happened and it had been 8 years since I’d seen her, hugged her, talked and laughed with her… oh man, it would have been excruciating.

We said things like:
“if it’s nothing and I could have gone and something happens, I’d feel horrible.”
“If it’s something and you need surgery or treatment of some sort, it could be a while until you get to go see them.”
“If it’s nothing and I go, no biggy.”
“If it’s something and you go, it could be worse, or something could happen while you’re there”

Every time he talked, his strange voice made me feel the urge to clear my throat.

The day before he left, he was talking and absentmindedly pressed on the swollen lymph node and his voice went away.
But he still went.
And I had three weeks to wait.
{Next post is here}

Just a peek

One thing I forgot to mention in the last post was his voice. He began to sound congested, but not like typical nasal congestion. This sounded like he needed to clear his throat. This had began back in December but very mild and not consistent. It seemed to be more noticeable after eating.

{Previous Post Here

So fast forward up to day 2 of the 5 day meds (second round of antibiotics). He started talking about his planned three week trip to South America and what he would do if this round of meds didn’t help. This was Thursday, February 8th. I suggested calling an ENT to see if he could take a better look. He had been feeling like something was stuck in his throat but no pain. His ear felt almost constant pressure, and often would get a very sharp shooting pain. I could see him grimace from it throughout the day so I knew it was getting worse. He called the ENT who did our now 24 year old sons tonsils 20 years ago and was able to secure an appointment for a quick exam the next morning. Please note what a miracle that is… a new patient getting in to a specialist the very next morning!!

I had to get Stacey ready for the bus so I didn’t go with him. I got a phone call from him saying, “well that escalated quickly!”  He said the Dr saw something curious and he should see another ENT who is better equipped to get a better look. He came home with this picture:


Me: What did the Dr say about this?
Hubs: To get it looked at.
Me: Did you tell him you leave the country in 2 days?
Hubs: Ya, he said to try and get it looked at today at this place (shows me card for Cedar Sinai)
Me: Ok, well, make some calls then!

Ok, so mind you, it’s Friday, he leaves the country on Sunday.

He made several calls and no one could get him in for two weeks. He asked what I’d do and I said I’d probably bump the trip. He decided to go.

He left Feb. 11 for almost 3 weeks.

While he was gone, I had some things to tend to, and if you know me, I’m good friends with Google and I know how to use it properly and not get sucked into places I don’t need to be.

{Next post is here}

The “Cold”

In November our family started sharing the colds that were going around. No one got the dreaded flu, but we all had our fair share of colds. My hubby, Carlos, seemed to get a mild cold that just wouldn’t go away. His cough was dry and annoying, (to himself, not us, well ok, to us too, lol) but not concerning. As December came he started to feel sick again, this time a mild ear ache and pressure in his jaw.  We had a busy month with our oldest and her hubby visiting for a week and Christmas so he just tolerated his mild, yet annoying, symptoms.

In January he was getting annoyed by the ear pain, and began to think he had tonsillitis.(He still has his tonsils) He also noticed a swollen lymph node and took that as confirmation that he should get some antibiotics. He never ran a fever, so up until this point, he assumed it was viral and would pass. He used a program our insurance covers called Teladoc. He described his ear, throat and jaw pain to a Dr over the phone and was prescribed antibiotics for ten days.

In February, about two weeks after finishing those antibiotics, he still didn’t feel better so he went to urgent care. They looked in his ears, nose and throat and saw an enlarged tonsil so they prescribed a five day stronger antibiotic. This would be finished on the first day of his previously planned three week trip to visit his parents in South America.  That’s when things shifted gears.

{Next post is here}

Outtakes are my favorite! Here’s a few from our Christmas season!


Writing is my Therapy

God is our refuge and strength, a very present help in trouble. ~ Psalm 46:1


What do you do when life gets hard, scary, weary? Some people run or hit the gym, others eat or bury themselves in work.  I talk, I laugh, and I write. God was super kind to me and gave me a great sense of humor and the ability to find laughter and joy in the midst of hard things. Don’t get me wrong, there are plenty of times I can’t see the joy, let alone laugh, and I cry my heart out and I get angry and I question God’s plan. He kindly brings me back because joy comes from within and nothing can take that away.

This blog is a place for me to write about some current things going on, as well as some things in the past. We want to share our journey and, we truly hope, to encourage others and to share things we have learned along the way.

I’m Shannon, wife to Carlos, mom to five, a mother-in-law and “bonus” gramma to two sweet girls! I also have 2 dogs, 2 cats, and 12 chickens on 2.5 acres of dirt that is home to two owls, a lot of woodpeckers, road runners, quail, and sometimes gopher snakes and even coyotes!  We’ve had some interesting things come to our family and I look forward to sharing them with you!  If you want to stay “in the know” of our latest situation, scroll to the bottom and follow and you’ll get email updates when I post new info.

For now, here are some photos so you have faces to the names.

All the kids on the tractor.
It was so fun to have the kids all together and do a silly photo shoot!


all 5 kiddos
CJ, Robby, Michelle, Stacey, Alexia and her hubby Andy
Carlos and Shannon
We never manage to both be ready for the picture to be taken!