It’s been since February 2015. Almost four years. That was the last time we’ve had a cancer hiccup. I say “hiccup” because life is so much bigger than cancer. If you are familiar with Carolyn’s cancer journey, it has been one that even her current docs say is one for the textbooks. If you want to review the saga, previous blog posts are listed below.
As far as “now,” we’ve kept things somewhat under wraps for over a month, simply because we haven’t known exactly what we’re dealing with and the course of action we’ll be taking. We’ve kept our families and church leadership informed each step of the way, but as we’ve done in the past, we have used my blog to get the word out and to recruit prayer.
Carolyn has had a lump under her jawline for at least five years. The doctors have been aware of it and have watched it carefully at each of her regular checkups. This year, it started getting sore, and it finally got downright painful. It was time for surgery to remove the rogue lymph node, and of course, with Carolyn’s history that also meant a biopsy. Surgery was scheduled for September 25, and after a few days of waiting, we were totally surprised by the results.
Here's the timeline for perspective:
The biopsy on the mass removed from Carolyn's neck/jaw which we thought was a rogue lymph node turned out to be a rare, destructive salivary gland cancer. (Because it was rare, and because of her history with cancer, we asked for a second reading of the biopsy. The second reading, a few weeks later, confirmed the first. It is adenoid cystic.)
After discovering the salivary gland cancer, they asked Carolyn to get a PET scan on Saturday (Oct 13), which she did. This was to see if it was in other spots.
The results of the PET scan came back, and while there was no evidence of cancer in other salivary glands, there is a hot spot on one of her tonsils and in her throat, and there were some lymph nodes in her groin that lit up.
Carolyn’s doctor referred her to the Comprehensive Cancer Center, which is part of the Wake Forest Baptist Health system in Winston-Salem, NC. Two appointments were set up - one with an ENT specialist and one with a Hematology/Oncology specialist, who both deal in rare cancers.
Visited with Otolaryngologist (ENT) at CCC WF.
The visit was pretty sobering. Long process ahead.
The doc’s recommendation is surgery on her neck again to "clear the margins." It will be more extensive than the previous surgery.
Then five weeks of radiation, 5 days a week.
He ordered a new CT scan (which she had that day) and wants to do a biopsy of her throat when he does the surgery to see what that shows.
The doc wants to do more research before the surgery is scheduled.
Visited with Hem-Onc at CCC WF.
He thought the spots in the groin were secondary to the salivary gland cancer. His focus was on the salivary gland. He is recommending 4-6 weeks of chemo and radiation first, then surgery.
Told us that her case will be presented to a Tumor Board on Nov 14 to discuss her case and come up with a plan. This will also include a radiologist to determine if Carolyn can receive more radiation (she had a massive amount back in 1991).
He wants to see how the cancer responds to the chemo/radiation before determining surgery extent.
He does not want to address the nodes in her groin/abdomen yet. While he suspects they are not cancer (may be sarcoid - which doesn't need to be treated), he stressed the primary concern is the head/neck cancer.
WF CCC called and said that the Tumor Board met and recommend:
MRI with perineural invasion to determine nerve involvement
Genomic testing blood work to determinemakeup of the cancer
After more pathology from second surgery, the Tumor Board will determine the treatment.
Surgery is penciled in for Tuesday, December 11, at Wake Forest. Six week recovery.
What we heard today was different from the process described last week, which was chemo/radiation first, determine how the cancer responds, and then surgery. Today’s news was surgery first, then we will determine radiation/chemo later (which is what was recommended on Oct 31).
How to respond:
Don’t freak out. We are not. It is what it is, and we are not in control. Our life perspective is centered in the bedrock certainty that God is great, and God is good. That He is love. Nothing can touch us except what He’s appointed. It doesn’t feel good, and we certainly have questions, but since cancer is a reality (again), we are confident that His grace will be sufficient each day.
Speaking of grace… we may have bad days. It’s ok. We’re not perfect. Jesus is. Please don’t hold Jesus responsible for our imperfect responses. Give us grace, and pray that our bad days and shaky moments are few. And don’t be unnerved if/when either of us snips, snaps, gripes or struggles. It’s normal. We are going to lean heavily on strength of Jesus, confident in Him. Any failure to reflect Him is not due to His brightness but our dullness.
Pray. I think that goes without saying. Seriously. -Pray for Carolyn’s thought life and mind as well as healing. - Pray for the surgery to not be damaging to facial nerves. We have lived with the craziness of cancer for 27 years. Whoa. You know what has ushered us through these moments? God’s love has been poured through your prayers. He’s real, folks. So pray. I can affirm with great confidence what the apostle Paul says in 2 Corinthians 1.11:“...you join in helping us by your prayers. Then many will give thanks on our behalf for the gift that came to us through the prayers of many."
It’s not fun. It’s an interruption. It’s an inconvenience. However, like all of life’s hiccups, it’s an opportunity. There may be some moments of genuine suck along the way. Don't be alarmed, and don't get discouraged if we need to be reminded to not be alarmed.
There's lots of home-grown remedies for hiccups. And some people have hiccups for years! We're going to hold our breath, hold onto Jesus, and lean forward in faith.
7:06a - Checked in at Wake Forest Baptist and they have just taken her back for the surgery.
7:39a - Surgery has begun. Estimated two hours. Listening to Hillsong's Christmas cd. Good stuff.
9:51a - Still in surgery. I've been down to Starbucks in the lobby 2x and also discovered the cafeteria offers a breakfast combo of scrambled eggs, hashbrowns and two strips of bacon for only $3.18. So that's a plus. ðŸ¥“
10:20a - She is out of surgery and in recovery. Doc said things went very well. He took quite a bit of tissue to ensure he got everything from cancer but said nerves were protected (good news for her smile). We won't hear back on pathology report of that tissue until first week of January. He also took a biopsy of the back of her tongue/tonsil area that had shown up on PET scan because the tissue there was inflamed. He said he wasn't concerned too much but needed to know why it showed up on the PET.
11:00a - I was successful at taking my Starbucks cup from earlier back downstairs for a free refill. Just thought everyone would want to know there's no statute of limitations on refills if you keep your cup. Of course, this is a Baptist hospital, so maybe it's refill grace.
1:56p - Carolyn is in her own room and will stay overnight. She had a hamburger for lunch, and we are grateful for the caring people and excellent facilities here at WFBM. Thank you all for praying and following along today!
5:39p - She’s doing great. And the cafeteria is amazing. They deliver to the room. Main course. Two sides. A dessert. $5.99. Amazing. If you know someone in the hospital here, you need to visit, then pick up the phone in the room, dial food services and order while you're visiting. Good food, delivered? Can't beat it.
10:30a - The patient is doing well and will be discharged this morning. Staying on top of her pain meds. Next steps: six weeks of radiation (they want to meet again first to determine if she can have that much in her neck/head area). Waiting for pathology reports and biopsies from tissue taken yesterday as well.
Update 12/13/2018 - "A new wrinkle"
This is going to sound like I'm making things up.
10:34a - Hey folks. New wrinkle. Carolyn went to doc this am to get her drain port from the surgery removed. She had a bad blood pressure spell there when they removed it. They even called an ambulance. She stabilized and went home. Since then, however, the pain in her abdomen and legs has been immense.
6:31p - Ok team.. this is a bit ... crazy. Buckle in. This afternoon, at home she had another blood pressure spell and was in a lot of pain in her abdomen and legs so we went to the ER to figure out what’s. They ordered scans. The ultrasound was clear. No blood clots. However, the CT scan showed enlarged lymph nodes pressing against her ureters and bladder - causing the major pain.When compared to the CT scan she had in October, there has been SIGNIFICANT growth. Her oncologist was called, and she now thinks it’s lymphoma. They are admitting her because they will need to do a needle biopsy to determine that. It might still be sarcoidosis (growth possible there too) but a biopsy is required and they admitted her to the hospital for pain control and to ensure prompt scheduling of biopsy.
Right now, we are in “no one really knows” land until we have a definitive report on what this is. But the concern obviously is the rapid growth. Carolyn’s mom is going to the house to get stuff and will stay with her tonight.
God is up to something in all this. Pray that we will experience Him and that He is glorified while Carolyn is comforted, blessed and is given endurance.
9:17a - We are waiting for a needle biopsy this morning. It will be the next stage of fact-finding. Carolyn's pain is intense outside of the meds, so that's not a happy place to be in for her. Pray for endurance and for the pain to be mitigated.
1:45p - I have found where they keep the coffee pot â˜•ï¸for the staff, and when you walk into the room with nonchalance and innocence, you are allowed to pour yourself a cup of coffee with no one asking you what you're doing or why you're drinking "staff" coffee. Strangely, after a few cups, I find myself wanting to wear a smock.
2:19p - Biopsy done and results will take a few days. They will begin to transition her to oral meds to see how she does (she’s been on IV since we got here) and then consider her going home.Obviously, the enlarged lymph nodes need to be treated but it looks like they want to first find out what they are.Thanks for prayers. And thanks to Chick-Fil-A soulmates last night and today: Leah Hughes, Julie Jewell, and Erin Petersen.
2:34p - When I was a kid, my folks would say, "Were you raised in a barn?" in some strange attempt to tell me to close the door which I had a problem leaving open. Apparently medical personnel were raised in barns. Here and at Wake Forest, I find myself bouncing up after they leave the room to.. close the door. Do you think if I moo loudly at the next person who comes in, that they will get the message?
5:20p - They are keeping her another night to be safe with her pain management. Starting her on pills instead of IV and will observe. Also giving her steroids to treat the inflammation of either sarcoidosis or lymphoma. Antibiotics also. She’s not happy with staying, but without meds, her pain inches up to being off the scale. Adelyn arrived this afternoon for the holidays, having finished her finals at CNU. She promptly tried on a pair of the blue rubber gloves and ate Carolyn's leftover Chick-Fil-A.
8:50a - She’s doing much better this am. The transition to oral meds and steroids overnight has her feeling alert and only mild pain. She will be checking out soon. She has an appt with the oncologist Tuesday and a followup in Wake Forest on Wednesday.
Thanks for your prayers. As we know more, we will update you.