A new wrinkle
The Cancer Hiccups post was getting long enough to become a novel. This post is part 2 of that post, simply because these hiccups won't go away. I wrote in the 12/13 update on that post that we'd had "a new wrinkle," and since this post details our attempts to iron out that new wrinkle (while still battling hiccups), I thought I'd title it that way.
A quick catch-up
If you're just joining us, here are the Spark Notes:
In September, Carolyn had surgery to remove what we thought was an enlarged lymph node in her jaw that had become painful. We discovered that it was actually a rare, destructive salivary gland cancer. With that news, doctors order a PET scan to determine abnormal activity. In addition to the area of that one salivary gland, the back of her tongue/tonsils and several lymph nodes in her abdomen/groin area showed up as active.
We had known something was up in her abdomen/groin area because for a couple of months prior, she'd been experiencing pain and soreness. Doctors had attributed that to enlarged lymph nodes due to sarcoidosis.
After consultation with doctors here in Blacksburg and at Wake Forest Baptist, Carolyn had a second surgery to make sure all the initial salivary gland cancer was removed. At that time they also took tissue from her tongue/tonsils area to study.
That was last Tuesday. On Thursday, she went in to her local ENT here to have the drain port from the surgery removed. In doing so, her blood pressure dropped dramatically, and an ambulance was called. She was able to go home, but pain in her abdomen and legs erupted and became so severe, we took her to the ER and before we knew it, she had spent two nights in the hospital, just getting her pain under control. A CT scan showed enlarged lymph nodes that were even bigger than the CT scan from October. It was these lymph nodes, pressing against her ureters and kidneys that were causing the pain.
In order to understand what was going on in these nodes, they did a needle biopsy. She was also placed on a high dosage of steroids in order to attempt to reduce the lymph nodes and control the pain. It worked. She was able to return home on Saturday and has been taking it easy since then as she continues to recoup from the surgery and pain incident.
The new wrinkle
This morning we went to her local oncologist, and while she didn't have the test results back from the needle biopsy, both she and Carolyn were pleased of how the steroids had helped and believed that the lymph nodes were sarcoidosis (we'd been told that by the docs at Wake Forest as well). So we prepared to go to Winston-Salem tomorrow for the next post-surgery consultation and also to catch her docs there up with the incident last week in the hospital.
I was just about to walk into lunch at El Gran Rodeo with our church staff after our weekly meeting when Carolyn called and informed me that her local oncologist had called with preliminary results from the biopsy - non-Hodgkins lymphoma, cancer. She asked me not to say anything at the time, to wait while she gathered her thoughts. It was a surreal lunch and afternoon. In retrospect, I think that's what caused me to lose in corn hole when we played on our return to the office.
Responding in prayer and praise
Carolyn was home with Sam when she got the phone call. Adelyn and Carolyn’s mom were on a shopping trip. Sam was able to pray over Carolyn an incredible prayer, one that spoke truth, comfort and power. What a blessing to be led spiritually by your son at such a time. It sounds like a Jesus Juke, but amazingly enough, Adelyn had been inspired to write a song last night. I was watching TV in the man cave when she came out and played/sang it for me. I was stunned. Not because it's so good, but because it is now so fitting to this moment - in so many ways. It is a melody for crying out to God.
After Adelyn and Teresa returned from their shopping trip, Adelyn sat down in front of the fire place, and she played it for Carolyn. I wanted to share it with you
Now before you think we are some kind "super spiritual" family. We are not. We are sooooo normal. Quirky. Strugglers. Scared. What makes us unique at all is only our rabid confidence that Jesus is who He says He is. He is our Savior.
We are clinging to Him even as we are crying out.
So many are confused about being a Christian. Trusting Jesus is not so that you can go to heaven when you die. That's the eternal blessing, eternal life. Trusting Jesus is supposed to make life fuller, deeper and more meaningful TODAY. Being a Christian is about enjoying a love relationship with Jesus daily. We suffer. We strain. We stress. We hurt. But that's what makes Christianity so radically different from every other world religion. It alone addresses the hard reality of this broken world with real answers and real hope.
I wrote in Cancer Hiccups a section called "How to Respond," and I think it's worth re-sharing, simply because it's STILL what we'd ask:
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. This was answered! 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.
One verse comes to mind during these ridiculous days of fighting cancer on numerous fronts:
Now we have this treasure in clay jars, so that this extraordinary power may be from God and not from us. We are afflicted in every way but not crushed; we are perplexed but not in despair; we are persecuted but not abandoned; we are struck down but not destroyed. We always carry the death of Jesus in our body, so that the life of Jesus may also be displayed in our body. (2 Corinthians 4.7-10)
What does one do in days like this when you're hit from all angles? You grab Jesus' hand, and you get back up. Pray for us to keep getting up. Interestingly, I preached a Christmas message Sunday night entitled Let Others Watch in which I shared that "when God works in our lives, it invites others in to watch, and it moves them to worship as well." I feel so unworthy to ask anyone to "watch" our lives during these days of turmoil, because I know how imperfectly we attempt to reflect a perfect God. It is also not something fun to watch. But with your prayers, I'm going to say with great humility... pray and watch.. and see for yourself how Jesus deals with wrinkles.
He is just too good to not be praised.
Stitches are out. Initial path from the surgery showed only a microscopic trace of adenoid cystic cancer. So surgery was successful. Still waiting on treatment plan and news on whether testing was done for lymphoma.
10:30a - Carolyn has a doc appt today with local oncologist to try to get some forward movement on treatment for the lymphoma they found last week. She’s experiencing pain and is trying to keep that managed but the meds leave her feeling tired. So she’s not mobile and that’s probably driving her crazy as much as not knowing next steps.
8:30p - The doc appt today settled that Carolyn will need to begin chemo therapy as soon as they can determine what type of lymphoma we are dealing with. Because she is still battling pain, the oncologist is going to begin her on some initial chemo to try and shrink some of the lymph nodes to relieve her pain. Her regimen will change after type is determined. We still don’t know about radiation treatment for the neck/head area. Waiting on word about that. Please continue praying for pain mgmt and Carolyn’s strength as well as encouragement. Thank you!!!
Got the path report back today. It is for sure Diffuse Large B-Cell Lymphoma. The ball is rolling now. Monday, she willI get her chemo port. Wednesday, they want to do a heart echocardiogram. Thursday, first chemo (6 treatments, every 3 weeks). Thanks for your prayers.
1:30p - They just took Carolyn back for the surgical procedure to install her port so that she can receive chemo treatment beginning Thursday. As always, thank you so much for your prayer and care.
2:36p - She’s out of surgery. Port installed. Will be released in 45 or so. In other news, the hospital cafeteria was closed = quick Bojangles visit for me.
10:00a - Carolyn started her first chemo 20 minutes ago. It will take several hours. Then she will have to come back tomorrow to finish it due to one of the meds not being available. We will also be going to Wake Forest tomorrow am for a consultation with lymphoma doctor there, so busy few days. Pray that this first round of chemo begins to relieve her pain. It is hard to manage well. Pray over the weekend for her as she recovers from the chemo as well - no nausea, etc. Thank you all!
9:30p - Carolyn’s chemo lasted allllll day. From 900-500. And that was just one med. She will go back tmrw at 2p for the second regimen. She had a reaction to the med today and they had to halt it for a bit. But tonight she feels some pain relief - probably from high dose of steroids today and the other meds. Of course, the chemo side effects will hit later this weekend, so you can be praying for her strength then. A God moment today - we were approved for a grant and the most expensive chemo med will only cost $5 each time!! (Instead of $2500) Blue Ridge Cancer Center worked hard for us to get the grant. This was only one of the many meds she will receive but it was a huge encouragement.
Carolyn had an appointment today with the radiologist in Salem. Basically, they are not going to proceed with radiation. It’s too risky based on how much she’s received in the past versus the benefits. The oncologist believes that we can adjust the chemo to also help treat the neck area. So.. Carolyn is relieved to avoid the radiation. She is also feeling better after her first chemo treatment and her pain from the inflammation/enlarged lymph nodes is significantly less. Thank you for praying.
Wanted to provide the latest. Carolyn has had two chemo treatments so far. She begins the third round on Monday (out of six). The new round includes new meds. She will go all day Monday. Then on Wednesday after 2 hours of chemo she will take home an IV bag which will drip for 24 hours (it will go with her to work on Thursday). Four hours Thursday afternoon. Two more hours on Friday. This chemo mix is strong, so it's spaced out.
She has a PET scan Saturday to determine how the lymphoma is responding so far to the chemo. They have also put on her heat medication due to the stress and strain on her heart from the chemo. She has experienced high blood pressure and heart rate.
We deeply appreciate your prayers and kind thoughtfulness during this season.
Carolyn’s last three days of chemo this week (tomorrow thru Friday) will be spent at Roanoke Memorial Hospital. They want to keep her on fluids around the clock and monitor her since the meds are so strong. The PET scan results came back and showed that the lymph nodes have shrunk in size, so the lymphoma is responding to the chemo so far! We are grateful for your prayers to date. She will have two rounds of treatments after this week is over, and then the docs want to regroup and think about next steps (which may involve a stem cell transplant).
Carolyn starts the next round of chemo this week. We think she has two more after this week. It’s a rough cycle. Monday locally. Tuesday-Thursday in the hospital in Roanoke so she can be monitored 24/7. Thank you in advance for prayers!
Carolyn has to have a blood transfusion tomorrow. It will take all day at the hospital. She’s not been feeling good and could use your prayers for stamina and joy. She’s not had one of these before and they will be monitoring her to make sure she doesn’t have reactions.
This is to get her blood feel count up for her next round of chemo that begins next Thursday.
Carolyn starts her next round of chemo today here in Blacksburg. Tomorrow she’ll check back into the hospital in ROA through Sunday for chemo there. (One day here, three there). Keep her in your prayers please and thank you for your kindness.
Carolyn started chemo today, met with the doctor and found out that this will be last treatment!! She was supposed to have one more after this but her bone marrow is weak and not replenishing white blood cells as fast as they should. So the risk outweighs the benefit. So this treatment is the last chemo and she’s relieved. However, her WBC is very low so this treatment will be tough on her and her recovery since these chemos have had a cumulative effect on her body.
Thanks for the prayers!
Carolyn is done with chemo after a long last four days! Thank you for praying. She needs prayers for the days ahead. Her white blood cell count is very low and so she will need to be careful and avoid getting sick.
They want to do a PET scan in 6 weeks to check and see if lymphoma has been knocked. Depending on results of that, a stem cell transplant may be next step.
But in meantime, she’s relieved to be done with chemo. Pray for her strength and spirit as she now battles post-chemo and enters another “wait mode.”
Went to the doc to interpret the scan from Sunday. It’s a complex update. She’s not a normal patient. :-) The results of the pet scan are no changes from the February pet scan. Since there is little activity, the doctor says that Carolyn is in “partial to complete remission.” We are so deeply appreciative of your prayers to this point.
Next steps — the doctor wants to see her in six weeks to talk about a stem cell transplant which she believes is the wisest course to ensure that the cancer is completely beaten back. There will be a CT scan in three months which will tell us even more.
in the meantime, it’s an opportunity to take a deep breath, choose rejoicing, and embrace summer.
We will update you in six weeks :-)