An Update on Chuck

Chuck had his second infusion today. It started with a visit to the dermatologist first thing this morning and he counted 13 nodules (up from 8 last time we were there) and another tumor behind his ear.

Plus he found a spot that looks suspiciously like basal cell carcinoma so he did a biopsy. He said it's very mild, it won't spread and if it is cancerous they'll be able to get it all with surgery. He was very casual about it. We should get those results in about a week.

But... all of this is expected because the medication takes a few weeks to really begin to work. It's natural for the cancer to grow during that time.

 The view from the waiting room.

We left for a few hours (bought a new microwave and Chuck got a new Smart watch) then we stopped at Lake Washington for a few minutes before heading back for more appointments.

The nurse practitioner felt so bad that we had to come back and she told us that it's perfectly okay to ask the scheduler to try and get all the appointments around the same time. 

They did a blood draw and we found out that everything came back normal. Everything! That's a direct answer to prayer!

Next they put in the IV line, then we headed to the back for the infusion. He didn't get a lot of sleep last night so he dozed off during the procedure. (He worked until 1am.) We're thankful they got us in early. We actually left there before the time of our original appointment! So now we wait and watch for this cancer to shrink!

 

What We Know So Far

We had a Zoom meeting with the immunotherapy doctor last week and he showed us the MRI scan they did on May 15th. Looking down through the top of his head you can see the tumor very clearly on the right.

The white spot in the center is his spinal cord and the round spot on the right is the tumor
(The tumor is actually under his left ear, this picture might be flipped. I quickly snapped a photo when the doctor showed it to us during a Zoom meeting.)

* I went out and bought a 3-ring binder to keep all of our notes and doctor's contact information, lists of medications, appointments... our calendar has never been so full.

* I've printed out the photos and names of all the doctors so I know who we're talking to, who we're meeting with...

* Melanoma doesn't respond to chemotherapy. So we're not going that route. We're actually happy Chuck won't have to go through chemotherapy.

* Radiation will target only specific areas and Chuck has so many nodules plus the tumor, that radiation's not the best treatment.
 
* His cancer cells have mutated to BRAF G469R and they're not sensitive to pills, so pill therapy's not an option. (I've read about BRAF mutations but I still don't understand it.)

* With the doctor's recommendations we've decided on IV immunotherapy and he begins treatment this week. Each session is 45 minutes and he'll have one every 3 weeks. They'll monitor the meds closely to make sure the side effects don't become overwhelming.

* None of the doctors have said anything positive or encouraging. They just give us the facts. 

I was up until after 1:00 in the morning earlier this week reading about BRAF genes and melanoma and different medications... there was nothing positive. Everything I read about Chuck's cancer was negative and scary. 

You know how you click on this link and that link, well after a while I found myself on a list of testimonials - page after page of people who have this type of cancer who have survived! Some were from people who are still going through treatment but the rest had survived and were now cancer free! Those are the ones I read over and over.

I copied some of them to a Word document, included the website, and saved it to my docs. Then I printed them out and put them in our notebook. 

It gave me hope!

Our pastor spoke on David and Goliath this last weekend. A seemingly impossible fight. How Goliath was massive and scary... and Goliath thought he was preparing to fight the Israelites but he was actually facing their God. The Holy God of Israel. Guess who won?

That gave me hope!

God is on our side and He's so much greater than the enemy who only wants to steal, kill and destroy us.

Hope!

The enemy's strategy is intimidation and fear. Which is what I got when I was going through all those websites. But my God is a warrior. Zephaniah 3:17 - The Lord your God is with you, the Mighty Warrior who saves.

Hope. Encouraging hope!

I Choose...

About a week and a half ago I was cleaning Chuck's incision and noticed what looked like two new satellite nodules just outside the incision site. When we met with the radiologist he believed they were cancerous. And when we met with the surgeon today for a post-op appointment she took biopsies of them both and said there might be a total of seven.

We've learned Chuck has Stage 3 Desmoplastic Melanoma, a rare and aggressive skin cancer. He is scheduled for an MRI this Friday to find out if the cancer has spread any more and once we get the results from that we'll be able to figure out the best treatment options.

If I let myself really think about it it becomes overwhelming and scary and I can't think of anything else...

But when I put it in the Lord's hands, when I pour out my heart to Him and remember that my God is so much bigger and greater than cancer, I truly feel better. After all, He hung the moon in the sky and told it to control the ocean tides. He can definitely handle a few rebellious cells in the human body!

So... I choose to be happy.
To just go on living our lives as normal. 
That may change as treatments take over but for now...
I choose happy.

~~~~~~~~~~~~ 

I had a wonderful Mother's Day this weekend. We did drive-through for lunch with Sharaya and Allie (they were in their car) and then we went to the Centennial Trail about 45 minutes from our house. They rode bikes while the 3 of us walked. They came together for a few seconds for a photo then they were off again! It was such a warm day and felt so good to be outside. And there was no one around so no masks!

 How was your weekend? 
Did you try to get together with family?

Surgery Update

We got to the hospital at 6:45 this morning and they checked him in. He got a call last night with some last minute instructions and they told him I'd have to leave when he went back to pre-op. Still, I was prepared to stay the whole day (books, snacks, etc.) when we left the house this morning.

As they were checking him in, the triage nurse looked at me and asked, "And you're staying?" Chuck and I looked at each other and smiled under our masks, "Yes!" Surgery would start around 9am and would take about 3 hours. They took him back at about 7:15 and I headed to the surgical waiting room.

I don't know if this is normal operating procedure but they now call you when they begin the surgery. They call again in the middle to update you, then again if there are situations that come up and even again when the surgery is over. It was amazing! There were 5 of us in this waiting room (keeping our distance) and they were getting calls left and right. You could hear parts of the conversations, some happy, others were scary as you heard, "You found more?!" 

For me 9:00 came and went. No call. 9:30 came and went. Then 10:00, 10:30, 11:00, I was trying not to panic. How come I wasn't getting any updates?! Not sure what to do I went back down to the check-in area (one floor below) and by then I couldn't hold back the tears. I felt foolish but I was so nervous! The charge nurse came out and said the mapping had taken longer then expected and he was now headed into surgery. She wrote down my name and number and assured me I would get some updates. 

At 12:20 my phone rang and a nurse told me they had started the surgery and she would let me know when it was over. I was so thankful! 

At 2:43 I got another call from the nurse telling me he was ready to go home and she wanted to go over all the discharge papers.

Wait, what?! The surgery is over?? And he's going home? For days they've been telling us he'll be spending the night, that after a surgery like this they want to observe them for 24 hours so come prepared to spend the night... and we did. And now he's going home? And the surgery is over?? I had so many questions for the surgeon so the discharge nurse had the surgeon call me. (No face-to-face due to Covid-19.) I grabbed my journal and started writing answers...

The mapping procedure took so long because they couldn't find any cancer in his lymph nodes! The surgeon had told us last week, "The cancer always drains to the lymph nodes. We do the mapping to find out which one." Thank you Lord for answered prayer! No cancer in those lymph nodes! They spent 90 minutes looking for some but didn't find any! 

We won't know until next week if they got all the cancer. They'll have to do some scans to find out. But we're very hopeful they did!

So I gathered all my stuff from the waiting room and headed to the pharmacy. An orderly (do they still call the person who wheels you out of the hospital an Orderly?) brought Chuck to the pharmacy and the 3 of us headed down to the car.

So tonight he's home, a little groggy and in a lot of pain (some of the meds are making him nauseous) but he's home. I want to thank you all for your prayers and concern. He's not out of the woods yet but tonight I'm so thankful he's home.

Email, Scans and Life At Home

A couple of months ago Outlook stopped working for us so we've had to go to hotmail.com to see our email. But we have 4 different email addresses (work, blog, etc.) and we couldn't just log out of one and into the other one. We had to wait 10 minutes or the previous email address would come up again. So I haven't been able to get your posts through email! Not very easily anyway. It's been so frustrating! Well today Chuck got Outlook working again! And of course it's one of those things where he can't tell me what he did. You know when you click on the same button you've been clicking on, only this time it worked?! Ah, technology. But now we have access to all of our email - woohoo!

Well, tomorrow Chuck goes in for his PET scan. The oncologist told us that because the cancer is on his scalp, it will drain into his lymph nodes and the scan will show how much it has drained and to which nodes, by the ears or in the neck. The ones in the neck are easier to get to and the ones by the ear have a facial nerve that is in front of the node and it needs to be moved to the side before they can do the surgery. It sounded like there was quite a risk. As of right now the surgery is scheduled for April 14. 

Chuck drives a metro bus and I've been concerned that he's still out driving when his immune system is compromised. But he got the okay yesterday to stay home! Plus he's got enough time built up that he'll still be getting paid. That whole situation is an absolute answer to prayer. A direct, without-a-doubt answer from God! 

God is so good!

In the meantime Beth and I been hunkered down at home. I only go out when I need to go the grocery store. Does anyone else feel awkward getting into your car? It's almost like I have to remind myself how to drive it every time I get into it!  

We have been trying to go for walks every day. There are a lot of people with that same idea!

 How are you coping?

I hope you're doing well. 

Stay safe and healthy!