Month: March 2018

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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: 11-12

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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—->>>>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.

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

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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 (www.highfivesforstacey.com) 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.

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Some pictures from his super relaxing trip!

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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.
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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.

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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.

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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.

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

Photo bomber!

Totally normal right?

Outtakes are my fave!