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.
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 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.
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.